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Nursing and Stroke Rehabilitation: Relationship of Stroke Survivors' Quality of Life, Functional Abilities and Meaningfu...


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1 NURSING AND STROKE REHABILITATION: A STUDY OF THE RELATIONSHIP OF STROKE SU RVIVORS' QUALITY OF LIFE, FUNCTIONAL ABILITIES, AND MEANINGFUL FUNCTION By KATHY P. SMITH 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 2007

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2 Copyright 2007 by Kathy Smith

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3 To my mother and in loving memory of my father both of whom are respons ible for instilling in me the values of knowledge, hi gher education, and scholarship.

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4 ACKNOWLEDGMENTS I thank James Gainer, Jr., M.D., who ha s encouraged, guided, and supported me throughout my professional career. Without his support, I would not have been able to complete this degree. I also thank my mentor, Dr. Mary Frances Borgman Gainer, who introduced me to the concept of rehabil itation, nurtured my growth, and was in strumental in starting me on the road to my professional career. She has continued to be a mentor and friend and provided a great deal of encouragement throughout this process. For his continuous loving encouragement and his conviction in my ability to complete this degree I thank my husband, Gene. I thank the chair, Dr. Stechmiller, and members of my supervisory comm ittee, Dr. Neff, Dr. Lutz, and Dr. Gravlee, for their mentoring and encouragement. I also wish to thank other faculty in the University Of Florida College Of Nursing who have guided my study. In particular, I wish to thank Dr. Godbey for her keen assistance in clarifying my ideas.

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5 TABLE OF CONTENTS Page ACKNOWLEDGMENTS...............................................................................................................4 LIST OF TABLES................................................................................................................. ..........9 ABSTRACT....................................................................................................................... ............11 CHAPTER 1 INTRODUCTION..................................................................................................................13 Overview....................................................................................................................... ..........13 Quality of Life................................................................................................................ ........14 Functional Ability............................................................................................................. ......16 Meaningful Function............................................................................................................ ..17 Theoretical Perspective........................................................................................................ ...18 Statement of Problem........................................................................................................... ..18 Research Problem............................................................................................................... ....20 Assumptions and Limitations of the Study.............................................................................21 Significance to Nursing........................................................................................................ ..21 Definition of Terms............................................................................................................ ....23 Quality of Life................................................................................................................ .23 Meaningful Function.......................................................................................................25 Functional Ability............................................................................................................25 Depression..................................................................................................................... ..26 Social Support.................................................................................................................27 2 REVIEW OF THE LITERATURE........................................................................................31 Introduction................................................................................................................... ..........31 Stroke......................................................................................................................... .............31 Incidence...................................................................................................................... ....32 Cortical Location of the Str oke and Functional Deficits.................................................32 Right brain stroke.....................................................................................................33 Left brain stroke.......................................................................................................33 Brain as a functional whole......................................................................................33 Summary........................................................................................................................ ..34 Stroke Rehabilitation.......................................................................................................... ....34 Rehabilitation and Quality of Life..........................................................................................36 Quality of Life................................................................................................................ ........36

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6 Conceptual Development................................................................................................37 Ferrans conceptual model.......................................................................................38 Ferrells conceptual model.......................................................................................39 Day and Jankeys model of the evaluation process of quality of life......................40 Measurement Issues.........................................................................................................41 SF-36........................................................................................................................41 SIP............................................................................................................................42 SIS............................................................................................................................43 QLI...........................................................................................................................44 Measurement of quality of life in this study............................................................45 Functional Ability............................................................................................................. ......47 Disability and Handicap..................................................................................................48 Measurement Issues.........................................................................................................49 The Functional Independence Measure...........................................................................50 Barthel Index.................................................................................................................. .50 Quality of Life and Functional Ability............................................................................52 Meaningful Function............................................................................................................ ..54 Subjectivity of Functional Ability...................................................................................54 Meaningful Function and Handicap................................................................................54 Normalcy....................................................................................................................... ..55 Valued Activities.............................................................................................................55 Independence and Mastery..............................................................................................57 3 METHODOLOGY.................................................................................................................59 Introduction................................................................................................................... ..........59 Subject Sample................................................................................................................. ......60 Subject Selection.............................................................................................................60 Inclusion/exclusion criteria......................................................................................60 Demographic characteristics....................................................................................61 Deficit characteristics...............................................................................................61 Co-existing health problems.....................................................................................62 Study Design and Procedures.................................................................................................62 Instruments.................................................................................................................... .........66 Mini Mental State Exam..................................................................................................66 Reliability.................................................................................................................67 Validity.....................................................................................................................67 Demographic Questionnaire............................................................................................68 Review of Systems..........................................................................................................68 Barthel Index.................................................................................................................. .68 Reliability.................................................................................................................69 Validity.....................................................................................................................69 Quality of Life Survey.....................................................................................................70 Reliability.................................................................................................................71 Validity.....................................................................................................................71

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7 Cantrils Self-Anchoring Striving Scale..........................................................................72 Reliability.................................................................................................................73 Validity.....................................................................................................................73 Center for Epidemiological Studies-Depression Scale....................................................74 Reliability.................................................................................................................74 Validity.....................................................................................................................75 Perceived Social Support From Family and Friends.......................................................75 Reliability.................................................................................................................76 Validity.....................................................................................................................76 Data Analysis.................................................................................................................. ........78 4 RESULTS........................................................................................................................ .......85 Introduction................................................................................................................... ..........85 Descriptive Statistics......................................................................................................... .....86 Quality of Life................................................................................................................ .86 Meaningful Function.......................................................................................................86 Depression..................................................................................................................... ..86 Social Support.................................................................................................................87 Months Since CVA and Age...........................................................................................87 Examination of Relationships of the Variables......................................................................87 Question 1..................................................................................................................... ...87 Question 4..................................................................................................................... ...88 Descriptive Interview Data Analysis......................................................................................90 Question 2..................................................................................................................... ...90 Question 3..................................................................................................................... ...90 Text Analysis All Subjects..............................................................................................91 Top Five Terms...............................................................................................................91 Relationship Oriented Nouns..........................................................................................92 Verb Usage..................................................................................................................... .92 Verbs occurring in both texts..........................................................................................93 Comparison of Text Across Age Groups........................................................................94 Meaningful Function.......................................................................................................95 Quality of Life................................................................................................................ .97 5 DISCUSSION..................................................................................................................... ..112 Introduction................................................................................................................... ........112 Discussion of Data Analysis.................................................................................................112 Descriptive Analysis......................................................................................................112 Quality of life.........................................................................................................112 Functional ability....................................................................................................113 Meaningful function...............................................................................................113 Depression..............................................................................................................114 Social support.........................................................................................................115

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8 Correlation/Question 1..................................................................................................115 Quality of life.........................................................................................................116 Functional ability....................................................................................................117 Meaningful function...............................................................................................119 Depression..............................................................................................................119 Social support.........................................................................................................120 Age.........................................................................................................................120 Months/CVA (stroke).............................................................................................120 Multiple Regression/ Question 4...................................................................................121 Descriptive Data/Questions 2 and 3..............................................................................122 Limitations and Recommendations...............................................................................126 Sample related limitations/recommendations........................................................126 Instrument related limitations/recommendations...................................................126 Concept related limitations/recommendations.......................................................127 Implications...................................................................................................................128 Research.................................................................................................................128 Practice...................................................................................................................129 APPENDIX A INFORMED CONSENT TO PA RTICIPATE IN RESEARCH..........................................131 B MINI-MENTAL STATE EXAM.........................................................................................141 C DEMOGRAPHIC QUESTIONNAIRE................................................................................144 D REVIEW OF SYSTEMS......................................................................................................145 E BARTHEL INDEX..............................................................................................................146 F QUALITY OF LIFE SURVEY............................................................................................148 G CANTRILS SELF-ANCHORING STRI VING SCALEQUALITY OF LIFE...............150 H CANTRILS SELF-ANCHORING STRIVI NG SCALEMEANINGFUL FUNCTION.151 I CENTER FOR EPIDEMIOLOGIC STUDIES-DEPRESSION SCALE.............................152 J PERCEIVED SOCIAL SUPPORT FROM FAMILY AND FROM FRIENDS..................153 REFERENCE LIST................................................................................................................. ....155 BIOGRAPHICAL SKETCH.......................................................................................................168

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9 LIST OF TABLES TABLE Page 1-1 Study variables and a ssociated instruments............................................................................30 3-1 Selected demographic characteristics of the sample of stroke survivors...............................82 3-2 Samples post stroke deficits............................................................................................. .....84 3-3 Samples co-existing health problems....................................................................................84 4-1 Means of variables QOLS, SASS/QOL, SASS/MF, BI, MMSE, CES-D, PSS/FR, PSS/FA, Months Since Stroke, Age..................................................................................99 4-2 Frequency distribution for variab les QOLS, SASS/QOL, SASS/MF, BI, MMSE, PSS/FR, PSS/FA, CES-D, Months Since Stroke, and Age.............................................100 4-3 Correlations between variables............................................................................................. .102 4-4 Simultaneous multiple regression; QOLS as dependent variable........................................103 4-5 Simultaneous multiple regression; SASS/QOL as dependent variable................................103 4-6 Summary of associations found between quality of life and independent variables by measure of quality of life.................................................................................................104 4-7 Comparison of nouns pe rtaining to relationship..................................................................105 4-8 Comparison of verb usage between meaningful function.......................................................... and quality of life texts....................................................................................................106 4-9 Verbs occurring in either quality of life or meaningful function but not the other..............108 4-10 Distribution by age of terms used in disc ussing meaningful function and quality of life..109 4-11 Percentage of unique terms obtained from the total number of words used in discussing meaningful function and quality of life distributed by age group..................109 4-12 Comparison of verb usage across age groups in discussing m eaningful function.............110 4-13 Comparison of noun usage in discus sing meaningful functi on across age groups...........110 4-14 Comparison of verb usage across age groups in discussing quality of life.........................111 4-15 Comparison of noun usage in disc ussing quality of life across age groups......................111

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10 LIST OF FIGURES FIGURE page 1-1 Adaptation of Day and Jankeys model of the evaluation process of quality of life......28 1-2 Adaptation of Day and Jankeys model of the evaluation process of quality of life: selected variables an d method of measurement.............................................29

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11 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 NURSING AND STROKE REHABILITATION: A STUDY OF THE RELATIONSHIP OF STROKE SU RVIVORS' QUALITY OF LIFE, FUNCTIONAL ABILITIES, AND MEANINGFUL FUNCTION. By Kathy P. Smith May 2007 Chair: Joyce Stechmiller Major: Nursing Sciences Promotion of quality of life is often cited as a goal in the treatment of those with chronic illnesses and disabilities, including stroke, a lead ing cause of long term disability. Rehabilitation of stroke survivors focuses on deficits in physic al and cognitive functions. Recovery of function is expected to equate with improved quality of lif e. However, clinical re search on quality of life in disabled persons has failed to link patients perceptions of quality of life with functional ability. A descriptive, correlationa l study was designed with the purpose of advancing the understanding of the concept of quality of life of stroke survivors. The relationships of quality of life, meaningful function, functiona l ability and selected other vari ables were explored using Day and Jankeys Model of the Evaluation Process of Quality of Life. Seventy community-dwelling stroke survivors who were 3 to 60 months poststroke were recruited from the north-central Florida area. Data were collected using the Qual ity of Life Survey (QOLS), the Barthal Index (BI), the mini-mental status exam (MMSE), th e Center for Epidemiologic Studies-Depression Scale (CES-D), Perceived Social Support From Family and Friends (PSS/FA and PSS/FR), a

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12 demographic questionnaire, Cantrils Self-Anchor ing Striving Scale for Meaningful Function (SASS/MF), and Cantrils Self-Anchoring Striving Scale for Quality of Life (SASS/QOL). Data were subjected to correlational and simultane ous multiple regression analysis. Descriptive interview data were analyzed us ing a word analysis technique. Data analysis found a strong relationship betw een quality of life a nd meaningful function. The SASS/MF and the SASS/QOL have a stro ng positive correlation (r= .82, p=<.0001). This conclusion is supported by the moderate corr elation (r=.73, p=<.0001) between the SASS/MF and the QOLS. Multiple regression analysis found that the 75.32% of the variance in quality of life was explained in the model containing mean ingful function, functional ability, depression, social support, months since stroke, and age. St udy findings support the c oncepts of meaningful function and functional ability being different concepts. Support is also provided for the relationships of function, mean ingful function, and quality of life described by the Day and Jankeys Model of the Evaluation Process of Quality of Life.

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13 CHAPTER 1 INTRODUCTION Overview Quality of life is a concept that has attracted much attention in the past forty years. In health care, promoting quality of life is freque ntly the rationale for treatment decisions and enhancing quality of life is often cited as a goal of treatment in ch ronic illnesses and in rehabilitation (Rapkin & Schwartz, 2004; Post de Witte, & Schrivers, 1999, van Dijk, 2000). Promoting quality of life is, in fact, specifica lly described as a nursing responsibility in the Standards and Scope of Rehabilitation Nursing Practice (Association of Rehabilitation Nursing, n. d.), while identifying the components of a good quality of life and measuring those components have proven to be elusive. Stroke is a leading cause of long term disability in the Unit ed States. Death, either from the stroke itself or from secondary complications due to the stroke, is occurring less frequently (American Heart Association, 2006). As technol ogical advances have made it possible to support and extend life, individuals who would not have survived th e stroke in past years now do survive. Thus, current stroke survivors often have more complex deficits affecting their quality of life than did former survivors. Rehabilita tion of stroke survivors focuses on deficits in physical and cognitive functions that result from stroke. Treat ment goals relate to improving those functions. Logically, recove ry of function should be equate d with improved quality of life (Buck, Jacoby, Massey, & Ford, 2000; Clark & Blac k, 2005; Haacke, Althaus, Spottke, Siebert, Back, & Dodel, 2006; Nichols-Larsen, Clark, Zeringue, & Blanton, 2005; Samsa & Matchar, 2004; Secrest & Thomas, 1999). However, in clini cal research on quality of life in disabled persons, functional ability has inconsistently explai ned patients perceptions of either recovery or level of quality of life (Carlsson, Moller, & Blomstrand, 2004; Doolit tle, 1990; Lalu, 2003;

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14 Meeburg, 1993; Robinson-Smith, Johnston, & A llen, 2000; Samsa & Matchar, 2004; Secrest & Thomas, 1999). This may be due, in part to the di fficulty in defining the concept of quality of life. Quality of Life There is a general acceptance of the existe nce and the importance of the concept of quality of life, and it seems to be intuitively meaningful and understandable to most people (Burckhardt & Anderson, 2003). However, there is much disagreement about its conceptualization, as is illustra ted in a study of health care prof essionals that included primary care providers, occupational therapists, and physical therapists. This study showed wide variation in the definition of the concept as well as di fficulty in selecting an appropriate measurement instrument (McKevitt, Redfern, La-Placa, & Wolfe, 2003). Researchers have identified ma ny factors related to quality of life. However, quality of life has been defined in many ways and research ers have used various measurement instruments arising from different philosophical frameworks. The use of multiple instru ments and the lack of a consensual definition of the concept make a comparison of the research findings about functional abilities and quality of life difficult, lead ing to inconsistencies in the interpretation of what constitutes quality of life (Buck et al ., 2000; Farquhar, 1995; Ferrans & Powers, 1985; Haas, 1999; King, Haberman, Berry, Bush, Butler, Dow, Ferrell, Grant, Gue, Hinds, Kreuer, Padilla, & Underwood., 1997; Lau & McKenna, 2001; Meeberg, 1993; Post et al., 1999; Salter, Jutai, Teasell, Foley, Bitensky, & Bayley, 2005; van Dijk, 2000). There is substantial agreement on some n ecessary components of quality of life among authors. Both objective (i.e., income, education, occupation) a nd subjective indicators (i.e., expressed satisfaction with life) are considered important in the measurement of quality of life (Bluvol, 2003; Fabian, 1990; Ferrans & Powe rs, 1985; Goodinson & Si ngleton, 1989). In

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15 addition, researchers in general ag ree that the concept of quality of life includes (a) comparisons of historical life circumstances and current events, (b) cognitive weighing of positive and negative facets of life to determin e current quality of life, (c) s ubjectivity, (d) dynamism, and (e) tendency of the perception of quality of life to occur along a continuum (King et al., 1997). Researchers have identified ma ny factors that can contribute to quality of life including health care, physical health and function, marriag e, family, friends, stress, standards of living, leisure, future retirement, peace of mind, pe rsonal faith, hope, personal appearance, general happiness, and general satisfaction (Bluvol, 2003; Fabian, 1990; Ferrans & Powers, 1985; Goodinson & Singleton, 1989; King et al., 1997). In st udies of chronic illnesses researchers have consistently found associations between perceive d quality of life and the factors depression (Sobel, Lotkowski, & Mandel, 2005; Williams, 2005) and social support (Jaracz & Kozubski, 2006; Jaracz & Kozubski, 2003; Kim, Warrnen, Madill, & Hadley, 1999). Among stroke survivors, depression has cons istently been negatively correlated with quality of life (Haacke, Althaus, Spottke, Siebert, Back, & Dodel, 2005; Jaracz & Kozubski, 2003; Jonsson, Lindgren, Hallstrom, Norrving, & Lindgren, 2005; Kim, Warrnen, Madill, & Hadley, 1999; King, 1990; Kong & Yang, 2006; R obinson-Smith, Johnston, & Allen, 2000; Kim, Warren, Madill, & Hadley, 1999). In additi on, depression has been negatively correlated with quality of life in studies of populations with spinal cord injury (Bach, & McDaniel, 1993; Siosteen, Lundqvist, Blomstrand, Sullivan, & Sul livan, M. 1990), multiple sclerosis (DAlisa, Miscio, Baudo, Simone, Tesio, Ma uro, 2006; Khan, McPhail, Brand, Turner-Stokes, Kilpatrick, 2006; Pittion-Vouyovitch, Debouverie, Guillemin, Vandenberghe, Anxionnat, & Vespignani, 2006), Parkinsons disease (McDonald, Holtzheim er, & Byrd, 2006), coronary disease (Gott, Barnes, Parker, Payne, Seamark, Gariballa, & Small, 2006; Mendes, Czajkowski, Freedland,

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16 Bang, Powell, Wu, Burg, DiLillo, Ironson, Krumhol z, Mitchell, Bluumenthal, 2006), and cancer (Williams & Dale, 2006, Yen, Ko, Yen, Yang, Wu, Juan, Hou, 2006). In populations of stroke survi vors, level of social support ha s consistently been positively associated with quality of life (Gottlieb, Golander, Bar-Tal, & Go ttlieb, 2001; Jaracz & Kozubski, 2006; Jaracz & Kozubski, 2003; Kim, Warrnen, Madill, & Hadley, 1999; King, 1996). This positive associatio n between level of social support an d social functioning and quality of life has also been found in studi es of populations with a variet y of chronic illnesses, including spinal cord injury (Bach, & McDaniel, 1993; Sios teen et al., 1990), multiple sclerosis (Freeman, Langdon, Hobart, & Thompson, 1996), osteoarthrit is (Blixen, & Kippes, 1999), rheumatoid arthritis, systemic lupus erythematosus (Burc khardt, Archenholtz, & Bjelle, 1992; Jeffrey, 1989), cancer (Downe-Wamboldt, Butler, Coulter, 2006; Lim & Zebrack, 2006; Mellon, Northouse, Weiss, 2006; Roberts, Lepore, Helgeson, 2006) mental illness (Caron, Lecomte., Stip, & Renaud, 2005; Hansson, 2006), multiple sclerosi s (Schwartz & Frohner, 2005), and burn survivors (Anzarut, Chen, Shankowsky, & Tredget, 2005). Functional Ability Functional ability is indicative of an individuals ability to complete those activities that people do in the normal course of their lives to m eet basic needs, fulfill usual roles, and maintain their health (Haas, 1999). It is the most frequent ly used variable for measuring rehabilitation outcomes. In current theoretical/conceptual models functional ability is consistently linked to quality of life (Ferrans, 1996 ; Ferrell, 1995). However, as discussed below, research findings have not consistently supported this linkage. Research about the quality of life of disabled people has no t shown the anticipated direct correlation between the individua l's quality of life and functio nal level (Ahlsio et al., 1984;

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17 Blixen & Kippes, 1999; Cardol, Elvers, Oost endorp, Brandsma, & deGroot, 1996; Dunnum, 1990; King, 1996; Samsa & Matchar, 2004; Siosteen et al., 1990). This phenomenon has also been described in qualitative studi es of individuals with cerebral palsy (Kibele, 1989) and stroke (Doolittle, 1990; Secrest & Thomas 1999). In these studies, purpos eful or meaningful activity, rather than functional ability, was significant in determining quality of life. These findings support the observations of re habilitation professionals, w ho have long recognized that successful physical rehabilitation does not nece ssarily result in satisfactory adjustment to a disability or community reintegr ation (Delaney & Potter, 1993; Farzan, 1991; Samsa & Matchar, 2004; Spencer, J., 1993). At first glance, it does not seem logical that there have been such inconsistencies in the correlation between functional ability and quality of life. However, quality of life is an extremely complex, multi-faceted concept with a strong subject ive component. Much of the current stroke literature provides an etic perspective of the stro ke survivors life and does not provide insight into the meaning the individual attaches to ha ving a stroke (Clarke & Black, 2005; Doolittle, 1990; Secrest & Thomas, 1999). Functional ability is also measured from an etic perspective. The researcher measures what he/she believes is important to function and often does not take into account how the individual values the beha vior being measured. However, results from qualitative studies suggest that variations in the meaning the individual places on functional ability may be able to predict variations in st roke survivors quality of life (Clarke & Black, 2005; Doolittle, 1990; Rapkin & Schwar tz, 2004; Secrest & Thomas, 1999). Meaningful Function Meaningful function is the subj ective aspect of functional ab ility. The individuals values, beliefs, and life circumstances will determine th e relative importance of a specific functional ability (Delaney & Potter, 1993; Farzan, 1991; Rapkin & Schwartz, 2004; World Health

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18 Organization, 1980). Recovery from acquired disa bilities is often defined by the affected individual in terms of a return to activities important to the individual and to a reconnection to pre-disability concerns and soci al practices. This definition inco rporates the i ndividuals belief about normalcy, continuity with previous life e xperiences, capabilities, and consistency with ones self-identity (Clarke & Bl ack, 2005; Doolittle, 1990). The va lue an individual places on an activity or the perceived need to perform an activity affects an individuals performance of an activity. The relative perceived importance of an activity determines the number of resources an individual is willing to commit to an activity (Clarke & Black, 2005; Leidy, 1994). Theoretical Perspective Quality of life is a multidimensional concept th at involves an individuals self-evaluation of current life circumstances in the context of culture and value systems. It involves a subjective sense of well being encompassing physical, psychol ogical, social, and spiritual dimensions. Using a grounded theory approach, Day and Jankey (1996) have developed a model that describes quality of life as a subjective condition reflecting the level of life satisfaction (Figure 1). The individual evaluates lif e circumstances resulting in a subjective appraisal of life satisfaction. The evaluation proces s takes into account the indivi duals personal attributes, life circumstances and personal goals/achievements. Personal attributes include genetic disposition, values, and life experiences. The constituents of each individuals life circumstances are unique, due to the infinite number of possible factors that can influence life circumstances. This complexity of quality of life is what makes it difficult to measure (Day and Jankey, 1996). Statement of Problem In summary, quality of life is a complex, multidimensional, largely subjective concept that encompasses all aspects of ones life. There are an infinite number of factors affecting ones

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19 life circumstances, and thus, ones self-appraisal of quality of life. Instruments designed to measure quality of life attempt to assess many of th ese factors. Because of the vastness of the concept of quality of life, it is difficult to dete rmine how a specific factor influences ones selfappraisal of quality of life (Buck et al., 2000; Farquhar, 1995; Ferrans & Powers, 1985; Haas, 1999; King et al., 1997; Lau & McKe nna, 2001; Meeberg, 1993; Post et al., 1999; Salter, Jutai, Teasell, Foley, Bitensky, & Bayley, 2005; van Dijk, 2000). Rehabilitation professionals identify improved qua lity of life as a goa l of rehabilitation (Bluvol, 2003; Nichols-Larsen et al., 2005; Ostir, Smith, Smit h, & Ottenbacher, 2005). These professionals have long held that quality of life will be improved by maximizing functional ability. Stroke is a leading cause of chronic disability, resulting in a wide range of possible deficits following stroke. The goa l of rehabilitation has been to improve the stroke survivors quality of life by maximizing functional ability. There is not a set rehabilitation program or protocol for addressing the stroke survivors disability, so the re habilitation program is guided by the stroke survivors functional ability, with the most affected functional deficits receiving the most attention. However, research has not shown a consistent relationship between functional ability and quality of life (Ahlsio et al., 1984; Blixen & Kippes, 1999; Cardol, Elvers, Oostendorp, Brandsma, & deGroot, 1996; Dunnu m, 1990; King, 1996; Samsa & Ma tchar, 2004; Siosteen et al., 1990). There is evidence that ones level of meaningful function is im portant to ones selfappraisal of quality of life (Clarke & Black, 2005; Doolittle, 1990; Rapkin & Schwartz, 2004; Secrest & Thomas, 1999).

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20 There are at least two problems associated with quality of lif e research. First, though it is understood that many factors affect ones quality of life, it is not understood just how these factors interplay to determine ones quality of life. Perhaps meaningf ul function is a more important indicator of quality of life than functional ability; but perhaps functional ability is related to meaningful function. Second, the inst ruments that have been developed to measure quality of life attempt to address all aspects of quality of life, or measure what the researcher believes is quality of life. Grand tour instrument s are unable to isolate the effect of a small, specific factor on ones overall quality of life. Instruments measuring quality of life from the etic point of view (the researchers view) are no t sensitive to potential subjects view of quality of life. Because of these two problems with quality of life re search, one can not tell if (a) functional ability really has no impact on ones self-appraisal of quality of life, (b) there is some other type of interaction of f actors, such as an interacti on of meaningful functioning and functional ability, that does explain the impact of functional ability on quality of life, or (c) functional ability has not been found to impact quality of life only because current instruments are not sensitive enough to measure the relationship. Research Problem A goal of this study is to advance the unders tanding of the concept of quality of life, particularly in relation to str oke survivors quality of life, functional ability, and level of meaningful function by explori ng the relationships described by Day and Jankey. This proposal seeks to explore Day and Jankeys model of qua lity of life by studying the relationships of selected variables to quality of lif e (Figure 2). Personal attributes th at will be considered are age, length of time post-stroke, and post-stroke deficit. Life circumstances that will be included are functional ability, social support and depression. Individuals goals and achievements will be

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21 represented by meaningful function. The questions this study will attempt to address are as follows: 1. Are there relationships among meaningf ul function, functiona l ability, depression, social support and quality of life, le ngth of time post-stroke and age? 2. What terms do stroke survivors us e to describe quality of life? 3. What terms do stroke survivors use to describe meaningful function? 4. To what extent do the variables meani ngful functioning, functi onal ability, depression, social support, age, and length of time since stroke predict quality of life in stroke survivors? Assumptions and Limitations of the Study This study is based on the following assumptions: 1. Quality of life can be measured. 2. Individuals will respond truthfully to questionnaire items and interview questions. 3. The instruments measure the intended variables. The limitations of this study are: 1. The study will be comprised of a convenience sample of stroke survivors from one geographical area; therefore, caution must be exerted in generalizing to all stroke survivors or to stroke survivor s of a different geographic area. Significance to Nursing Nurses have a pivotal role in the care and rehabilitation of stroke survivors. Rehabilitation nursing is a specific practice of nursing care that is primarily directed toward assisting the disabled person to become re-integrate d into society to the hi ghest degree possible. This outcome is achieved using a two-pronged appr oach: (a) by teaching strategies to maximize

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22 the disabled persons functional abilities and (b) by mobilizing personal and societal resources. The promotion of quality of life is now also sited as an essential component of rehabilitation care (Bluvol, 2003; Nichols-Larson et al., 2005; Ostir et al., 2005). This outcome has been translated into practice by maximizing functional abilities. Based on current resear ch findings, the practice does not meet the goal. Level of functional abilities has not been associated with level of quality of life. Part of the difficulty with doing quality of life research lies in the complexity of the concept. Researchers in general agree on the broad concept of quality of life, but not on the components comprising quality of life or the rela tionships between the components. Without an understanding of the components of qua lity of life and their relations hips to one another, there is no way to know how, or if, functional abilities a ffect quality of life. Without an understanding of the components and their relationships, there is no way to know how to improve quality of life. Thus, it is difficult to know how to proceed in rehabilitation. Part of the difficulty with doing quality of life research lies in the complexity of the concept. Researchers in general agree on the broad concept of quality of life, but not on the components comprising quality of life or the rela tionships between the components. Without an understanding of the components of qua lity of life and their relations hips to one another, there is no way to know how, or if, functional abilities a ffect quality of life. Without an understanding of the components and their relationships, there is no way to know how to improve quality of life. Thus, it is difficult to know how to proceed in rehabilitation. In terms of quality of life, rehabilitation strategies have been based on intuitive thinking and have not been research based. By focusing on qua lity of life as it relates to functional ability and/or meaningful function, an understanding of this phenomenon may be gained. From this

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23 understanding, specific rehabilitation strategies to enhance quality of life may be identified. This research would then provide a basis for the provi sion of rehabilitation nu rsing care, and possibly in guiding the development of st roke rehabilitation programs and in identifying additional support systems necessary to maximize the stroke survivor's quality of life. The purpose of this study is to advance the understanding of the concept of quality of life. By focusing on selected aspects of quality of lif e, it may be possible to identify how particular variables affect ones self-appraisal of quality of li fe and identify what, if any, relationship exists between functional ability and quality of life. If this one area can be understood, it can be used as a building block from which other aspects of quality of life can be examined. Researchers have been studying the effect of other life circumst ances on quality of life. For example, Ferrell et al. (1991) studied cancer survi vors and the effect of cancer rela ted pain on quality of life. Once many different life circumstan ces are studied, the research outcomes can be analyzed and themes and patterns identified. Proceeding in this manner, eventually, the concept of quality of life, its components, and the relationships of the components will be understood. Definition of Terms Table 1 identifies the variable s of the study and the instrument(s) used to measure the variable. For the purposes of this study the following definitions will be used: Quality of Life Conceptual definition: Quality of life is a multidimensional concept that involves an individuals self-evaluation of current life circumstances in comparison with personal expectations in the context of culture, life experi ences, and value systems. It primarily involves a subjective sense of well-being encompassing physical, psychologi cal, social, and spiritual dimensions.

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24 Operational definition: Quality of life will be measured using two instruments. 1. Cantrils Self-Anchoring Stri ving Scale. This scale is us eful in measuring continuous data that are highly subjective by providing a wide ly applicable and easily adaptable technique (Cantrril, 1965). In this case, each subject will be asked to describe the best possible life on one extreme and the worst possible life on the other extr eme. This description takes into account the individuals own assumptions, pe rceptions, goals, and values and defines the anchoring points on the perceived quality of life continuum. Showin g the individual a ladder, each subject will be asked to indicate where on the ladder he/she fall s today, with the top being the best life as the individual defined it and the bottom the worst life as defined by that individual. Each subject will then be asked to indicate where on the ladder he/she fell prior to the stroke. This scale has been successfully used across cultures and with literate and illiterate respondents (Bernard, 1995). 2. In addition, quality of life will be measured using The Quality of Life Survey (QOLS), a 16 item Likert-type rating scale that measures satisfaction in six domains of quality of life: physical and material wellbeing; relations with others; social, communit y, and civic activities; personal development and fulfillment, and recr eation; and independence. The QOLS has been used with a variety of populations including healthy adults, as well as adults with various chronic illnesses (Burckhardt & Anderson, 2003; Burc khardt, Anderson, Archenholtz, & Hagg 2003; Burckhardt & Jones, 2005; Burchhardt, Woods Schultz, and Ziebarth, 1993, 1989; Flanagan, 1978, 1982; Liedberg, Burckhardt, & Henriksson, 2005) Because of the possibility of reading deficits with stroke survivors, the scale will be administered using an interview format. The QOLS is being used in this study to provide a do main-specific measurement of quality of life.

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25 Meaningful Function Conceptual definition: Meaningful function is indicative of the individuals ability to perform activities that are important to the indi vidual and are often indi cative of the stroke survivors pre-stroke interests and abilities. Operational definition: Meaningful function will also be assessed using Cantrils SelfAnchoring Striving Scale. Each subject wi ll be asked to describe the five most important/meaningful activities fo r him/her. Showing the individua l a ladder, each subject will be asked to indicate where on the ladder he/she falls today in terms of the level of satisfaction experienced with being able to participate in those activities. The top of the ladder represents being completely satisfied with level of particip ation in the activities and the bottom represents complete dissatisfaction. Each subject will then be asked to in dicate where on the ladder he/she fell prior to the stroke. Functional Ability Conceptual definition: Functional ability is a multidimensional concept that encompasses the entire domain of functioning. It is indicative of an individu als ability to complete those activities that people do in the normal course of thei r lives to meet basic needs, fulfill usual roles, and maintain their health (Haas, 1999). F unctional ability necessa rily includes physical functioning, cognitive func tioning, and communication.

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26 Operational definition: Functional ability will be assessed using two standard instruments. 1. Physical functional ability will be measured using the Barthel Index (BI). The BI was selected for use in this study because it has been widely used to measure functional ability of a wide range of populations, including stroke su rvivors and has had extensive reliability and validity testing (N eal, 1998). It is a ten item wei ghted scale measuring level of independence in the self-care activities of feeding, grooming, bathing, dressing, toileting, bowel/bladder continence, walking, climbing st airs, and chair/bed transfers (Kane, 1997; Moinpour, McCorkle, Saunders, 1988; Neal, 199 8). The instrument will be completed by obtaining the self-report of the s ubject using an interview format. 2. Cognitive functioning will be measured us ing the Mini-Mental State Exam (MMSE), which assesses orientation and higher cor tical functioning, including communication. This instrument is also used as a screening tool fo r orientation and ability to communicate verbally. The MMSE is an 11 item interview administered tool (Tombaugh. & McIntyre, 1992). Depression Conceptual definition: Depression is a biol ogically based mental disorder marked by altered mood in addition to diminished interest or pleasure in most or all activities, and often interfering with functioning or participation in daily activities. Operational definition: Depression will be m easured using the Center for Epidemiologic Studies-Depression Scale (CES-D). The CES-D measures the presen ce and severity of symptoms of depression over the past seven days, focusing primarily on cognitive and affective symptoms (Shinar, Gross, Price, Banko, Boldue, & Robi nson, 1986). In this study, the CES-D will be completed using an interview format.

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27 Social Support Conceptual definition: Social support is th e physical and emotional support provided by ones network of family, friends colleagues, and acquaintances. Operational definition: Social support will be me asured using the Perceived Social Support From Family (PSS-FA) and Friends (PSS-FR). This scal e was designed to measure the extent to which an individual perceives that his/her needs for su pport, information, and feedback are fulfilled by friends and family (Procidano & Heller (1983). In this study, the instrument will be administered using an interview format.

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28 Figure 1-1 Adaptation of Day and Jankeys model of the evaluation proce ss of quality of life LIFE CIRCUMSTANCES GOALS AND ACHIEVMENTS SELF EVALUATION PROCESS SELF EVALUATIO N PROCESS SELF EVALUATION PROCESS QUALITY OF LIFE PERSONAL ATTRIBUTES

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29 Figure 1-2 Adaptation of Day and Jankeys model of the evaluation process of quality of life: selected variables and method of measurement LIFE CIRCUMSTANCES Functional ability: Barthel Index; Mini Mental Status Exam Depression: Center for Epidemiologic StudiesDepression Scale Social support: Perceived Social Support from Family and Friends GOALS AND ACHIEVMENTS Meaning function: Self Anchoring Striving Scale/Meaningful function (Cantrils Ladder) SELF EVALUATION PROCESS SELF EVALUATION PROCESS SELF EVALUATION PROCESS QUALITY OF LIFE Quality of Life Scale; Self Anchoring Striving Scale/Quality of Life (Cantrils Ladder) PERSONAL ATTRIBUTES Gender, age, race, months since CVA, deficitDemographic Questionnaire

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30 Table 1-1 Study variables a nd associated instruments Variable Instrument Quality of Life Quality of Life Scale (QOLS); Cantrils Self-Anchoring Striving Scale/Quality of Life (SASS/QOL) Meaningful Function Cantrils Self-A nchoring Striving Scale/Meaningful Function (SASS/MF) Functional Ability Barthel Index (BI); Mini-Mental State Exam (MMSE) Depression Center for Epidemiologic Studies-Depression Scale (CES-D) Social Support Perceived Social S upport From Family (PSS-FA) and Friends (PSS-FR) Personal attributes Self-reported age, ge nder, race, length of time post-stroke (reported in months), and post-stroke deficit.

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31 CHAPTER 2 REVIEW OF THE LITERATURE Introduction This literature review covers six main ar eas: (a) stroke, (b) str oke rehabilitation, (c) quality of life, d) functional abil ities, (e) quality of life and functional abilit y, and (f) meaningful function. The discussion on str oke includes discussion of the incidence of stroke and an overview of stroke and resulting deficits. The goals of stroke rehabilitation and characteristics of stroke rehabilitation programs are discussed. The discussion of quality of life includes the definition of quality of life, its conceptual de velopment and selected conceptual models, and measurement issues and selected quality of life in struments. The discussion of functional ability includes a discussion of the concept in addition to discussion of disabi lity vs. handicap and a discussion of measurement issues. The relationship of the concepts quality of life and functional ability are then discussed, followed by a discus sion of the concept of meaningful function. Stroke In this section stroke incidence and epid emiology will be discussed. Pathophysiology of stroke and the common deficits resulti ng from stroke wi ll be described. A stroke may be a slow or rapidly developing condition resu lting from a disruption of cerebral circulation. As a result of this problem, signs of either focal or global disturbance of brain function occur. A strokes most outsta nding feature is the sudden onset of functional deficit(s). The deficit can range from the loss of a single function (such as the loss of the use of an extremity or the loss of the abil ity to talk) to a complete loss of all brain functions, resulting in a coma or death (Bader & Littlejohns, 2004).

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32 Incidence Stroke is the third leading cau se of death in the United Stat es, ranking behind diseases of the heart and all forms of cancer. Strokes are also the leading cause of long term disability in the United States. Approximately 700,000 people experi ence a new or recurren t stroke each year. From 1988 to 1993 the death rate from stroke dec lined 15.1 percent. This trend continued from 1993 to 2003 with a decline of 18.5 percent in the stroke death rate. Currently, there are approximately 4.5 million stroke survivors in the United States and roughly 40% of them have some deficit(s) (American Heart Association, 2006; Delaney & Potter, 1993; Mayo, 1993). In a study of a population of ischemic stroke survivors 65 years of age and older, 50 percent were hemiparetic. Twenty-six percent we re dependent in activities of daily living. Twenty-six percent were living in a nursing facility (American He art Association, 2006). In 2006, the estimated direct and indirect cost for stroke care is $57.9 billion (American Heart Association, 2006). Several health risk factors raise the inciden ce, mortality, and morbid ity rates of stroke. These include age, hypertension, cardiac disease, diabetes mellitus, hyperlipidemia, and previous stroke. Ethnicity also affects risk. Stroke ra tes are higher among Blacks, Hispanics, and Native American Indians. Other factors, such as the so cio-political climate of the current health care delivery system, may affect the patients access to acute medical care and/or the access to inpatient versus outpatient reha bilitation programs, thus effect ing mortality and morbidity of stroke survivors (American H eart Association, 2006; Mayo, 1993). Cortical Location of the Stro ke and Functional Deficits The type and extent of the functional deficit( s) that occurs in a stroke patient depends upon the area of the brain affected by the stroke itself. Several functiona l areas of the cerebral cortex are well identified in the literature. A stro ke primarily affecting the motor area will result in motor deficits, the extent of which depends on wh ich portion of the motor area is affected. It

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33 is also possible to have a stroke affecting onl y the sensory area, which is concerned with the reception and interpretation of general sensory da ta, vision, and hearing. Association areas are also often affected by stroke. These areas are related to higher mental processes such as the synthesis of complex memory patterns that form the basis of abstract thought. Strokes often affect both sensory and motor area s as well as the asso ciation areas (Bader & Littlejohns, 2004). Strokes often affect only one hemisphere of the brain. Because of this, the resulting characteristic deficit pattern is often referred to as either a righ t brain or a left brain stroke. Right brain stroke The right hemisphere is domina nt for visiospatial orientati on, constructiona l praxis, and judgment in about 90% of the population. In an in dividual with a right br ain stroke, there is a strong relationship between visual, spatial, perceptual, and motor dysfunction and the individuals ability to perform activities of da ily living (Bader & Littlejohns, 2004; Delaney & Potter, 1993). The patient with a right brain st roke usually exhibits motor and somatosensory deficits of the left side of the body (i.e., para lysis or paresis). Ofte n there is a compounding problem of neglect of denial of the left side of the body in a pa tient with a right brain stroke. Left brain stroke Language control is located in the left he misphere of 96.9% of the population. Thus, a patient with a left brain stroke often exhi bits problems with expressive or receptive communication. The person may also exhibit a para lysis or paresis of th e right upper and/or lower extremity (Bader & Littlejohns, 2004; Delaney & Potter, 1993). Brain as a functional whole Although primary parts of the brain may be af fected as described, it is important to remember that the brain functions as a coordinated whole organ. In other words, all areas of the brain are interconnected in such a way that da mage to brain tissue in one area does not result

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34 only in a loss of function of that specific area. Rather, the entire brain may suffer from a lack or loss of input from that area. As a result, ac tivities (such as balance, coordination, and thought processes) requiring integrated functioning of both hemispheres may be affected (Bader & Littlejohns, 2004; Doolittle, 1988 ). In a qualitative study using grounded theory method, Carlsson, Moller, & Blomstrand (2004) descri bed an astheno-emotional syndrome with associated mental fatigability as affecting pe rformance of activities and independence. Summary In summary, a stroke is not an easy entity to define. The resulting neurological deficits and functional deficits vary widely among the stroke population. The deficit(s) can range from the loss of a si ngle function such as th e loss of the use of an extremity or the loss of the ability to expr ess oneself to a complete loss of all higher cerebral functions usually associated with coma or death. The cause of all strokes is an interruption of the blood flow th e brain. The result of this disruption varies widely and it is not possible to generalize from one i ndividual to another individual as to the functional deficits that a str oke survivor may experience. Stroke Rehabilitation This section includes a brief discussion of rehabilitation philos ophy and rehabilitation methods utilized for stroke reha bilitation. The relationship of str oke rehabilitation to quality of life of stroke survivors is also discussed. Stroke rehabilitation is the pr ocess of helping a stroke surv ivor move from a state of dependence to a state of independe nce in relationship to his/her activities of daily living. The primary goal of stroke rehabilitation is to maxi mize the stroke survivors functional abilities. The areas emphasized are mobility skills such as ambulation and transferring from one surface or position to another (i.e. from a wheelchair to the car seat or from sitting to standing), dressing,

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35 bowel and bladder control, eating, hygiene (G ranger, 1998; Mayo, 1993; T easell& Kalra, 2004). Research continues to identify the most efficaci ous treatment modalities and program structure (Dombovy, 2004; Teasell & Kalra, 2 004). There are many different t ypes of stroke programs due to different underlying philosophi es guiding the rehabilitation (Dettmers, Teske, Hamzei, Uswatte, Taub, & Weiller, 2005; Kalra, Evans, Perez, Knapp, Swift, & Donaldson, 2005; Langhammer& Stanghelle, 2003; Lincoln, Walk er, Dixon, Knights, 2004; OConnor, Cassidy, & Delargy, 2005; Robinson-Smith & Pizzi, 2003; Studenski, Duncan, Perera, Reker, Lai, & Richards, 2005). Whatever type of program is used, rehabil itation of the stroke patient requires an individualized, multi-professional, and techni cal program (Aichner, Adelwohrer, & Haring, 2002; Management of Stroke Rehabilitation Ca re, 2002; Spencer, W., 1993). Most frequently, stroke rehabilitation is conducte d using a team approach. The rehabilitation team typically consists of professionals in physiatry, physical therapy, occupational therapy, speech therapy (if needed), nursing, and social wor k. In order to focus the diverse specialists on the specific needs of stroke patients and to provide consistent behavioral interventi on, inpatient stroke rehabilitation is often provided on a stroke un it where all the patients in that particular setting are stroke patients. Following a stroke unit concept, the members of the rehabilitation team are all specialists in providing the rehabilitati on care required by stroke patients. Traditionally, in the United States, indepe ndence in functioning has been emphasized in most rehabilitation programs. This reflects the American values of self-reliance and individualism. In contrast, re habilitation programs in the Un ited Kingdom place the emphasis on the individuals adaptation to the deficit, comp letion of the necessary environmental changes to foster adaptation, and mobilization of community support services to assist the individual in

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36 meeting basic care needs. This is more in keeping with the sense of collectivism in Great Britain (Strasser, 1992). Thus, the culture, traditions, values, life styles, and social system of each individual must be understood for effective and e fficient interventions to occur (Shah, Cooper, & Maas, 1992). However, it is interesting that studi es of stroke survivors in different countries identified similar deficits, concerns, and poststroke experiences (Bendz, 2003; Carlsson et al., 2004; Kirkevold, 2002; Martin, De llatolas, Viguier, Willadino-Braga, & Deloche, 2002; OConnell, Hanna, Penney, Pear ce, Owen, & Warelow, 2001) Rehabilitation and Quality of Life Though the primary focus of rehabilitation remains that of restoring, improving, and maintaining function in every day living, in the pa st decade the view that rehabilitation enhances the quality of life of people with disabilities has become prevalent. Rehabilitation professionals equate improved functional abilities with improved quality of life. However, little work has been done in the field of rehabilitation to devel op definitions and conceptualizations of the relationship between quality of li fe and functional abi lities (Day & Jankey, 1996; Granger, 1998; Secrest & Thomas, 1999; van Dijk, 2000). Quality of Life This section on quality of life in cludes a discussion of the con cept of quality of life and its development Selected models of quality of life are discussed. Day and Jankeys model and its role in this study is described. Measurement issues encountered in researching quality of life are explored. Selected instruments, as well as the rati onale for selecting the instruments used in this study, are discussed.

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37 Definition of the Concept Even though there is a general accepta nce of the existence and importance of the concept of quality of life, there continue to be multiple interpretations and measurements of quality of life. In 1985 Ferrans and Powers identified this short coming and described how this problem has lead to inconsis tencies in the interpretation of what actually constitutes quality of life. Eight years later, Meeberg (1993) noted that the concept remained ambiguous, and that no definition had been agr eed upon, making the concept of quality of life difficult to measure and empiric research diffi cult to perform. Burckhardt and Anderson (2003) note that the definition of quality of life continues to evolve. Part of the reason for the numerous interpretations of quality of life is that the concept of quality of life is used in many di verse disciplines such as advert ising, health care, economics and philosophy. Each discipline define s and applies the concept with in its perspective (Farquhar, 1995). Even within nursing, the diverse phi losophies and goals of care among nursing professionals make development of a consensual definition difficult. Those nurses primarily concerned with the impact of illness on physical functioning tend to define quality of life differently from those who seek to understand th e lived experience of an illness in relation to overall happiness and satisf action with life (Mast, 1995). Conceptual Development Politicians penned the term quality of life in the 1960s. U.S. President Linden Johnson has been quoted as using the term in a speech in 1964. Numerous indicat ors of quality of life have since been identifie d: health care access, physical h ealth and functioning, marriage, family, friends, stress, standards of liv ing, occupation, education, leisure, peace of mind, personal faith, personal appearance, general happiness, and genera l satisfaction. In addi tion, variables specific to the individual also have been found to affect quality of lif e: coping styles, social and

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38 interpersonal networks, existence of depression, personality characte ristics such as self esteem, locus of control, and optimism (Day & Janke y, 1996; Fabian, 1990; Ferrans & Powers, 1985; Goodinson & Singleton, 1989). Early work by Ca mpbell, Converse, and Rodgers (1976) and Flanagan (1978) identified five broad domains of quality of life: (a) physical and material wellbeing, (b) relations with other pe ople, (c) particip ation in social, community, and civic activities, (d) personal development and fulfillment, and (e ) recreation. Felce and Perry (1996) developed a similar model of quality of life by synthesizing the conceptu alizations developed in the disciplines of social welfare, rehabilitation, a nd mental health. They further hypothesized that quality of life is determined by (a) the objective assessment of lif e conditions in each domain, (b) the subjective evaluation of pers onal satisfaction in each domain, and (c) the weight each person places on the subjective and objective assessments of the domains based on personal values. As interest in the concept grew and research continued, researchers redefined quality of life from their own perspectives, reflecting their own priorities a nd interests. The resulting body of literature is disorganized and it is difficult to determine if the studies are describing the same concept (Day & Jankey, 1996). Several researchers have taken the position that the conceptual framework for quality of life should be developed using a qualitative appr oach, allowing the concept to be defined and developed by the respondents. Ferrans (1996) conceptual model, Ferrells (1995) conceptual model, and Day and Jankeys (1996) conceptual model were each developed using grounded theory method with different populations of individuals. Ferrans conceptual model Ferrans began researching the concept of quality of life in 1982 with the goal of developing a measurement tool. Philosophically th e resulting mode l stresses an emic point of viewquality of life depends on the unique expe rience of each person and only the individual

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39 can properly judge his quality of life. Initially, factors affecting quality of life were identified using an inductive qualitative research approach beginning with hemodialysis patients and then expanding to several other patient populations an d to the general population. Then, using factor analysis with a quantitative study design, four inte rrelated domains were id entified: (a) health and functioning, (b) psychological an d spiritual functioning, (c) soci al and economic factors, and (d) family. Quality of life is defined as a persons sense of well-being that stems from satisfaction or dissatisfaction with important areas of life; it is determined by the individuals subjective appraisal of satisfaction with life in each of the domains, as well as the relative importance of each domain to the individual. The Ferrans and Powers Quality of Life Index (QLI) was developed from this framework. The QLI measures subjective satisfaction and relative importance of indicator s of quality of life in each do main (Ferrans, 1996; Ferrans & Powers, 1985). Ferrells conceptual model Ferrell (1995, 1991) has developed a similar conceptual framewor k during her study of quality of life and cancer survivors. The fram ework includes four interrelated domains: (a) physical well-being and symptoms, (b) psychologi cal well-being, (c) social well-being, and (d) spiritual well-being. Quality of life is dete rmined by the interaction of objective life circumstances with the indicators of quality of lif e in each domain. Life circumstances will often impact various aspects of each domain and the m eaning will be given to the life circumstance through the interaction of the four domains. Even though authors do not agree on a de finition of quality of life or a way to operationalize the concept, there appears to be considerable agreement on the domains that comprise it. The conceptual frameworks of Ca mpbell, Converse, and Rodgers, Felce and Perry, Ferrans, and Ferrell each contain similar domains in spite of the fact that the domains were

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40 identified using different met hods and populations. However, these conceptual frameworks do not describe in any detail how the individual ar rives at his/her assessment of quality of life. Day and Jankeys model of the evaluati on process of quality of life Day and Jankey (1996) used a grounded theory method to develop a conceptual model that describes the process the in dividual uses to evaluate ones quality of life. This model assumes that quality of life is subjective and re flects the individuals level of life satisfaction. Quality of life is determined by examining and evaluating ones life circumstances. This evaluation model is comprised of th ree components: th e individuals life circumstances, the individuals persona lity, and the evaluation process. 1. The individuals life circumstances are unique. There is an infinite array of inputs into the determination of the life circumstances for any individual. The indicators and domains of quality of life are included as characteristics of ones life ci rcumstances. The individual compares his/her life circumst ances with that of others. 2. The individuals personality influences the way in which life circumstances are viewed and thus affects the evaluation process. Genetic disposition, ones values, and ones past experiences influence ones personality. Persona lity also includes such characteristics as optimism, perceived control over ones life, perseverance and resilience. 3. The evaluation process takes into consid eration ones goals and achievements and the external reactions of the environment. The eval uation process allows the individual to determine the meaning of the life circumstances and make an appraisal of his/her quality of life. Day and Jankeys model does not emphasize the do mains contributing to quality of life as did the previously discussed models. Rather, the em phasis of this model is on the process that the individual uses to arrive at his/her perception of quality of lif e. The process orientation of this model makes it appropriate for use in this resear ch. At this point in concept development, the

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41 constituents of quality of life are not in que stion. An understanding of the way a person determines the level of his/her ow n quality of life is necessary be fore attempts can be made to improve quality of life through treatments such as rehabilitation of stroke survivors. Thus, this model was chosen to guide this research. Measurement Issues The difficulty encountered in defining quality of life also afflicts measurement of the concept. It is essential that the method of measurement be c onsistent with the conceptual definition of quality of life. The items on the m easurement tool, and not th e definition adopted by the researcher, determine what is measured. If the researchers conceptual framework and the instruments conceptual framework do not match, the researcher may not be measuring what is intended (Kane, 1997; King et al., 1997; Mast, 1995). Conceptualization of quality of life has been ambiguous and operationalization of the concept varied. In addition, b ecause of the widely varying conceptual frameworks informing development of instruments to measure quality of life, comparing findings is very difficult. Researchers employ numerous in struments, but commonly sited instruments are the SF-36, the Sickness Impact Profile (SIP), the Stroke impact S cale (SIS), the Quality of Life Index (QLI), the Quality of Life Survey (QOLS), and Cantrills Self-Anchoring Scale (SAS). SF-36 The Medical Outcomes Study (MOS) was undertaken with one goal being the advancement of the state-ofthe-art of methods used monitoring of patient outcomes in medical practice and clinical research. From the MOS, the SF-36 (Short Form-36) was developed to survey health status. It was designed for use in clinical practice and research, health policy evaluations, and general population surveys (McHorney, Ware, & Raczek, 1993; Ware &

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42 Sherbourne, 1992). The SF-36 has since been adopted as a measure of hea lth-related quality of life. The items in the SF-36 were developed to measure the health concepts that are most frequently included in widely used health surveys including: (a) physical functioning, (b) social functioning, (c) role func tioning, (d) mental health, (d) gene ral health perceptions, (e) bodily pain, and (f) vitality. The full-le ngth MOS scale was used as a cr iterion for item selection. The items for the instrument were constructed from a subset of items that were shown to best reproduce the scores of the full-length, well-validat ed. The definition of quality of life measured by the Sf-36 is heavily influenced by the indivi duals functioning and health and does not take into account satisfaction w ith functional ability specifi cally or life in general. SIP The original purpose of the Sickness Impact Profile was to monitor health status and functional performance, allowing comparisons of i ndividuals with different types and severities of medical conditions. Since its development in 1972 it has had extensive field-testing. The SIP consists of 136 items grouped into six domain s: physical functioning, emotional functioning, social functioning, cognitive functioning, pain, an d overall well-being. These domains are further divided into twelve sub domain s: sleep and rest, eating, work, home management, recreation and pastimes, ambulation, mobility, body care and moveme nt, social interacti on, alertness behavior, emotional behavior, and communication (Kane, 1997; Moinpour, McCorkle, & Saunders, 1988). As with the SF-36, the definition of quality of life measured by th e SIP is heavily influenced by the individuals functional ability and does not take into account sa tisfaction with function specifically or life in general.

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43 A major disadvantage to using the SIP has b een its length, often requiring 30 minutes to complete. A 30 item Stroke Adapted SIP (SA-SIP) was derived from the original instrument and has been found to be psychometrically sound (van Staten et al., 2000). The SA-SIP consists of 8 subscales: body care and movement, mobility, ambulation, social interaction, emotional behavior, alertness behavior, communication, and household management. The subscales of sleep and rest, recreation and past time, eating, and work were deleted. As with the SF-36, the definition of quality of life measured by the SIP and the SA-SIP30 is heavily influenced by the in dividuals functional ability and does not take into account satisfaction with function sp ecifically or life in general. In fact van Staten et al (2000) found that SA-SIP30 and SIP scores showed no clear a ssociation with other psychological HRQOL domains or with health percepti ons reported by stroke survivors. Their analysis showed that The SA-SIP30 and the SIP were primarily measures of disability rather th an quality of life. SIS The Stroke Impact Scale was developed to comprehensively assess physical and psychosocial well-being of stroke patients, part icularly in terms of the effectiveness of therapeutic programs for treatment of stroke. It is consistent with the World Health Organizations model of disability. The inst rument was developed following individual interviews with stroke survivors and focus group in terviews with patients, caregivers, and health care providers. It consists of 64 items that are grouped into eight domains: strength, hand function, ADL/instrumental ADL (IADL), m obility, communication, emotion, memory, and participation. A question to assess the stroke survivors global percep tion of percentage of recovery from the stroke is also included. Th e domains of strength, hand function, mobility, and ADL/IADL can be combined into a single physical domain score. As is the case with SF-36 and

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44 the SIP/SA-SIP30, the definition of quality of life measured by th e SIS is heavily influenced by the individuals functional ability and does not take into account sa tisfaction with function specifically or life in general. It s philosophical underpinning is that of a disability model and not a quality of life model. (Duncan, P., Bode, R., Min Lai, S., Perera, S., Glycine Antagonist in Neuroprotection Americans Investig ators. 2003; Duncan, P. W.., Wallace, D., Studenski, S. Lai, S. M., & Johnson, D., 2001). QLI Ferrans and Powers Quality of Life Index (QLI) was developed to measure the quality of life of both healthy and chronically ill. The instrument takes into account the life domains noted by experts in the area of quality of life, the subjective evaluation of satisfaction with domains, and the unique importance of each domain to the individual (Ferrans, 1996; Ferrans & Powers 1985). The QLI consists of two sections, each cont aining 35 items. The first subscale measures satisfaction in the following ei ghteen areas: health care, phys ical health and functioning, marriage, family, friends, stress, standard of living, occupation, education, leisure, future retirement, peace of mind, personal faith, life goa ls, personal appearance, self-acceptance, general happiness, and general satisfaction. Th ese eighteen areas repr esent four domains of quality of life: (a) he alth and functioning, (b) so cioeconomic state, (c) psychological or spiritual state, and (d) family. The second subscale measures the importance of the domain to the subject. Satisfaction and level of importan ce are each rated on a 6 point Li kert scale (Ferrans & Powers, 1985). The QLI was developed specifically to ta ke into account the individuals valuing of each domain and thus provides some insight into the effect of an individuals values effect the

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45 measurement of quality of life. However, the in dividual items were developed from literature review and thus are strongly influenced by the researchers definition of quality of life. The QLI would be an appropriate choice for use in this study as it is conceptually consistent with the definition of quality of life being used. However, the instrument contains 70 items. With a population which may have language deficits, difficulty con centrating, and fatigue issues, the length of this instrument presents a significant disadvantage. Measurement of quality of life in this study In this study, two instruments were used to measure quality of life. The Quality Of Life Survey (QOLS), as modified by Burkhardt and collegues was used to obtain a domain-specific measurement of quality of life. It is consistent with this studys the definition of quality of life. It has been used and validated with several chronic illness populations. It is easy to administer and is brief. The QOLS was originally developed by Flan agan (1982, 1978) as part of a study to define the domains of quality of life. Scale it ems were developed using an inductive process to identify the areas important to i ndividuals quality of life. In orde r to represent differing points of view and types of experiences, approximately 3,000 people from all parts of the United States and from diverse backgrounds, ethnic groups and ages were asked to identify experiences that were important or satisfying to them. From this data, fifteen items representing five conceptual domains of quality of life were derived. Follo wing additional research with chronically ill populations, the scale was later adapted for use w ith chronically ill populations, which identified efforts to remain independent as being impor tant to quality of lif e (Burkhardt & Anderson, 2003; Burckhardt, Woods, Schultz & Ziebarth, 1989). The current scale consists of 16 items using a seven point Likert format to assess qual ity of life in five domains: (a) physical and

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46 material well-being, (b) relations with others, (c) social, community, and civic activities, (d) personal development and fulfillment, and (e) recr eation. The subject is asked to rate how well these quality of life items ar e met. Response choices are (1 ) terrible, (2) unhappy, (3) mostly dissatisfied, (4) mixed, (5) mostly satisfied, (6) pleased, and (7) delighted. Total score can range from 16 to 112. A higher score represents a hi gher quality of life. Average total score for healthy popul ations is about 90 (Burkhard t & Anderson, 2003).The QOLS has been used with a variety of popul ations including healthy adults, as well as adults with chronic illnesses including rheumatic diseases, fibromya lgia, chronic obstructive pulmonary disease, gastrointestinal disorders, cardiac disease, sp inal cord injury, psoriasis, urinary stress incontinence, posttraumatic stress disorder, and diabetes (Burkhardt & Anderson, 2003). In this study quality of life was also a ssessed using Cantrils Self-Anchoring Striving Scale (SASS). The SASS was chosen for use in this study because it is able to reflect the subjective and multidimensional nature of quality of life. The SASS was originally developed for use in a multi-national, multi-cultural study to asse ss a persons general sense of well-being at three points in time: past, present, and future The scale was based on the premise that each individuals expressi on of concerns, values and life percepti on can be used to establish top and bottom points of a self-defined measurement continuum. Cantril (1965) notes that it is particularly adaptable for studyi ng highly subjective concepts. The SASS consists of a representation of a 10-step ladder with the top and bottom rungs of the ladder representing each extreme of the c onstruct being measured. Self-anchoring refers to the methodology of asking the person to define/d escribe each end of the continuum, in this case quality of life. Thus, the resulting data are both numerical and narrative. By allowing the subject to define the scales anchors on an indi vidual basis, there is an improved opportunity for

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47 understanding the meaning of the numerical ratin g. The scale has been used to measure quality of life of individuals undergoing hemodyalisis, individuals with co ronary artery disease, with COPD, and with seizure disorder (Hartshor n & Byers, 1994; Hoothay, DeStefano, Leary, & Foley-Hartel, 1990). Carpenter (1996) adapted the methodology and scale to study self-esteem. Functional Ability The concept of functional ability and the relationship of disability to handicap are described in this section. Measurement issues of functional ability are di scussed. The relationship of quality of life and functional ability is discussed. There is considerable agreement among author s that self-care and mobility are central elements of functional status. However, this narrow focus does not adequately describe the concept. In actuality, functional ability is a mu ltidimensional concept that encompasses the entire domain of functioning. It is indi cative of an individuals ability to complete those activities that people do in the normal course of their lives to m eet basic needs, fulfill usual roles, and maintain their health. Functiona l ability necessarily includes physic al functioning, cognitive functioning, and communication (Haas, 1999; Kelly-Hayes, 1996; Moinpour, C., McCorkle, R.; Saunder, J., 1988). Functional ability also includes the concep ts functional capacity, functional performance, functional reserve, and functional ca pacity utilization (Leidy, 1994). Functional capacity is the individuals maxi mum potential to perform activities, or the functional level an individual is capable of accomplishing. Func tional capacity will vary among individuals depending on ones ge netic predisposition, as well as acquired physical and cognitive factors. Functional performance is the functional level at which the individual is actually performing regularly to meet basi c needs, fulfill usual roles, and maintain health and well-being. Functional performance is strong ly influenced by individual c hoice and includes those activities

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48 that an individual values and de sires to perform, within the li mits imposed by ones functional capacity. An individuals functional performance rarely equals his/her functional capacity. The degree to which an individual values a particular activity will determine how much effort and how many resources the individual w ill commit to performing the activity. Functional reserve and functiona l capacity utilization are components of the difference between ones functional capacity and functional performance. Th ey reflect the resources an individual has in reserve for times of perceived need. Disability and Handicap A disability results if functional ability is impaired to the point that an individual is limited or unable to fulfill normal roles (depending on age, sex, and social and cultural factors). Functional capacity can be augmented by using assi stive devices and adaptive strategies. In some cases, the individual can adapt to the disability to the extent that the individual does not experience role dysfunction. However, if a role dy sfunction exists even with the use of assistive devices and adaptive strategies, a handicap exists (World Health Organization, 1980). According to the World Health Organizations M odel of Disablement(1980), the six areas that a disability can specifically result in a handicap are a) orientatio n, b) physical independence, c) mobility, d) occupation, e) social integrat ion, and f) economic self-sufficiency. Thus, functional ability is more than ones ability to perform a specific movement or activity of daily living. However, rehabi litation focuses on restoring, improving, and maintaining function in everyday living (Grange r, 1998), emphasizing functional abilities related to physical functioning and being able to perform activities of daily living. Occupation, social integrati on, and economic self-sufficien cy are largely ignored. Instruments used in rehabilitation to measur e functional ability also emphasize physical

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49 independence and mobility (Granger et. al 1986). Some instruments measure functional performance, while ot hers measure f unctional capacity. Measurement Issues A major problem with functional status a ssessment is that researchers have been inconsistent with its operationalization. Res earchers have measured functional status in numerous ways, ranging from concrete measures of self-care to global measures of health, work activities and socialization. T hus, it is important to be cl ear about the purpose of the measurement and from this determine which domai ns of functional status are appropriate to measure within the context of a particul ar study (Moinpour, McCorkle, Saunder, 1988). Numerous standard instruments for measur ing individual performance are currently available (Moinpour, McCorkle, & Saunder, 1988) This measurement method offers the advantage that scores can be us ed to monitor clinical changes over time as well as to compare results within or between groups. Numerous concep tually different instruments have been used to measure functional ability, maki ng comparison of results difficult. Using an instrument that is widely accepted and used by rehabilitation professionals would strengthen the study. Assessment of functional status can be achieved by questioning the individual about his/her current level of functioning or by dire ct observation. The method used depends upon the purpose of the assessment. Behavior recall tech niques typically have questionable reliability (Bernard, 1995). In a study comp aring self-report vers us actual performance, Sinoff and Ore (1997) found that mean self-report score was consis tently higher than actu al performance scores on the Barthel Index. Conversely, in a study comp aring results on direct observation scoring on the Functional Independence Measure versus the telephone interview format (FONE FIM), Chang, Chan, Slaughter, and Cart wright (1997b) found that the te lephone format consistently generated lower estimates than did the observational format. Thus using this method to measure

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50 response to a rehabilita tion program would be suboptimal. However, when an estimation of function is the goal, self -report is often acceptable. Two instruments that have been widely us ed in stroke resear ch are the Functional Independence Measure (FIM) a nd the Barthel Index (BI). The Functional Independence Measure The FIM is currently the most commonly us ed functional assessment in both clinical practice and research. The FIM wa s designed to measure severity of disability and level of independence, to measure change over time (par ticularly while participating in a rehabilitation program), and to predict burden of care. Thus it measures actual pe rformance rather than capacity (Uniform Data System for Medical Rehabilitation, 1996). It consists of a seven-point scale that designates major gradations in be havior from dependenc e to independence and assesses the areas of self-car e, sphincter control, mobilit y, locomotion, communication, and social cognition (Granger, 1998). The administra tion time for the FIM is approximately 40 minutes. An alternative form, the FONE FIM, ha s been developed for follow-up of clients after discharge from rehabilitation and is to be administered over the telephone. This form includes all the same function areas and takes appr oximately 20 minutes to administer. The FIM is a copy-righted, proprietary inst rument. Permission to use the instrument must be obtained prior to using it and the instrume nt must be purchased. Training must also be obtained, which can cost several hundred dol lars (Uniform Data System for Medical Rehabilitation, 1996). Barthel Index The BI has also been widely used as a measur e of disability. It was designed to measure level of independence in basic activities of daily living (Kelly-Hayes, 1996; Neal, 1998). A 100point scale is used to create a weighted meas ure of self-care activit ies of feeding, grooming,

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51 bathing, dressing, toileting, bowel/b ladder continence, walking, c limbing stairs, and chair/bed transfers (Kane, 1997; Kelly-Hayes, 1996; Moi npour, McCorkle, Saunders, 1988; Neal, 1998). Typically, actual performance, rather than ca pacity is measured. The instrument may be administered by direct observati on, by self-report of ab ility, or by report of a care-giver (KornerBitensky & Wood-Dauphinee, 1995; Neal, 1998). As noted by its developers, an advantage of the BI is its simplicity (Mahoney & Barthel, 196 5). The instrument has only ten items and does not require extensive clinical know ledge to administer. Administration of the instrument using the self-report method can be completed in fi ve minutes or less (Monipour, McCorkle, & Saunders, 1988). This study is being conducte d with stroke survivors liv ing in the community. The researcher would not have the opportunity to observe the subject performing the various activities addressed by the FIM or the BI. Also, using a di rect observation administration method would substantially increase the ad ministration length and would maximize the intrusiveness of the instrument. For this reason functional ability was measured using selfreport. The FIM has in recent years become widely accepted in rehabilitation practice and research, making it an obvious choice for this study. Two disadvantages exist that resulted in excluding it from use in the study. First, the FIM does not lend itself to self-report. The FONE FIM is quite detailed and lengthy and would require at least 20 minutes to administer. Because of the number of instruments being used in this st udy, the instrument that provides the briefest adequate measurement of the variable has an advantage. Second, because it is a proprietary instrument requiring a fee to purch ase it and a fee to rece ive training, the cost to using it in this study was prohibitive.

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52 The BI has also been widely used in disability and research literature. It is conceptually compatible with the study; it is appropriate for the study populati on; and it is psychometrically sound. The BI has the distinct advantage that it is br ief, taking five minutes or less to administer, and is amenable to being reported by self-report. It is in the public domai n, so no fee is required to use the instrument. For these reasons, the BI was chosen for use in this study. Quality of Life and Functional Ability Each of the models of quali ty of life described above incl udes functional ability. Felce and Perrys (1996) domain of physical well-being includes fitness and m obility. The domain of development and activity includes independence, productivity, and activity. Ferrans (1996) model identifies a health and functioning domain, wh ich includes most areas of physical and role functioning. Ferrells (1991) phys ical well-being and symptoms domain includes physical functional ability. Role functioning is included under the social well-being domain. Based on these models of quality of life, one would expect quality of life and functional ability to be highly correlated. However, while functional ability may be related to quality of life, the relationship is unclear. Res earch has shown little support for a relationship between quality of life and functional ab ility. Discovering this relationship is further hinder ed by the use of widely varying methods of operationalizing qua lity of life and the us e of quality of life instruments that actually meas ure function or disability. Ahls io, Britton, Murray, and Theorell (1984) found that even though stroke survivors functional ability improved, their perceived quality of life did not necessa rily improve. King (1996) found th at level of functioning was a weak predictor of quality of life in stroke su rvivors. Bethoux, Calmels, & Gautheron (1999) found that quality of life in stroke survivors may deteriorate somewhat over time while disability level remained unchanged. In studies of spinal cord injured persons, individuals possessed a positive level of life satisfaction in general, bu t there was no correlation found between quality of

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53 life and functional level (Dunnum, 1990; Siosteen.et al., 1990). In a study of individuals with amyotrophic lateral sclerosis, Ca rdol et al (1996) f ound no significant correlation between level of functioning and quality of life. Wilcocks (1998) doing-beingbecoming framework for desc ribing human occupation provides some useful insight into the relationshi p of function to life. Wilcock discusses human occupation as a synthesis of doi ng, being, and becoming. Occupation in this context is more than that activity undertaken to provi de income to support oneself. D oing is the active portion of occupation and is the most readily observable portion and the most familiar. Wilcock discusses purposeful doing as an activity that humans engage in almo st continuously, ranging from things that individuals think they must do to th ings they want to do. Doing can over power the individuals existence, negativ ely affecting health and well-being. The concept of being is fundamental to philosophical inquiry and ha s been pondered by philosophers throughout the ages. It involves contemplation and enjoyment of the inner life, including being true to oneself and ones nature. Being requires taking time to reflect on what is the essence and important to the individual. Becoming is the transfor mative element involving developing, changing, growing. Human occupation involves all three of these elements. In order to maximize health and well-being, people strive for balance among th ese dimensions in their occupational lives. Wilcocks conceptual framework for human occupation identifie s the importance of doing/functioning in human life, but also identifies that there is more to human occupation, or functioning, than just doing. This framewor k emphasizes the importance of balancing doing/functioning with being and becoming. Through b eing the individual is able to reflect inwardly ascertain what is important to him or herself and make judgments as to the state of his/her life in relation to his or her occupation. This inward reflection is essential to the

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54 perception of ones quality of life (Felce & Pe rry, 1996). Through becoming the individual can learn and grow, maximizing occupa tional potential. Health is maximized by achieving balance among doing, being and becoming in ones occupational realm. Meaningful Function In this section the concept of meaningful function is discusse d. Included in this discussion are the relationship of meaningful function and handicap, the concepts of normalcy, valued activities, and independence/mastery. Subjectivity of Functional Ability Functional ability has a subject ive aspect. The value an individual places on an activity or the perceived need to perfor m an activity affects an individuals functional performance (Leidy, 1994). The individuals values, beliefs, a nd life circumstances will determine the relative importance of a specific functional ability, just as the individuals values, belief, and life circumstances determine the relative importance of other various factors in an individuals life leading at the perception of quality of life. The relative perceived importance of an activity is what determines which functions are meaningful for an individual. Meaningful Function and Handicap An individuals functional performance doe s not necessarily refl ect actual functional capacity or the presence/degree of disability. The presence of a disability will limit an individuals functional ca pacity. However, the presence of a ha ndicap (i.e. interference with role function) is often more a function of the individu als response to the disa bility than the actual disability. The individual will interp ret the experience of a disability within the context of his/her life and will give meaning to the experien ce (Delaney & Potter, 1993; Farzan, 1991; World Health Organization, 1980). The in dividual, with unique strengths, weaknesses, life experiences,

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55 perception of the disability, coping mechanisms a nd available resources, largely determines to what degree the disability will affect his/her life and cause handicap. Recovery from acquired disabilitie s is often defined by the aff ected individual in terms of a return to activities important to the individual and to a reconnection to pre-disability concerns and social practices. This definition incorpor ates the individuals belief about normalcy, continuity with previous life experiences, capabi lities, and consistency with ones self-identity (Doolittle, 1990). Thus, the ability to walk in itself may not be highly valued by a particular stroke survivor; however, the activities that requ ire being able to walk may be highly valued. Normalcy Rehabilitation in the United States has tr aditionally emphasized independence and recovery of function. Thus, stra tegies are aimed at maximizing functional abilities. However, those receiving the rehabilitation services do not always share this value. Recovery from acquired disabilities is often defined by the affect ed individual in terms of a return to activities important to the individual and to a reconnection to pre-disability concerns and social practices. This definition incorporates the individuals belief about normalcy, continuity with previous life experiences, capabilities, and consistency with ones self-iden tity (Doolittle, 1990). The concept of being normal has been identified in many studies as be ing integral to an individuals recovery process. Normalcy was often related to resu ming adult societal roles, such as returning to work, participat ing in personal relationships, a nd seeing oneself as capable and self-determining (Baker & Stern, 19 93; Carpenter, 1994; Krefting, 1989). Valued Activities As discussed above, recovery fr om acquired disabilities is of ten measured by returning to valued activities and a re connection to pre-disability concerns and social practices. This concept has been described in some qualitative studies of recovery from disability.

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56 In a qualitative study involving five indi viduals with cerebral palsy, Kibele (1989) described the limitation of the medical rehabilitati on model with cerebral palsy patients. These individuals remembered the valu e placed by the rehabilitation pr ofessionals on ambulation at all costs and on maximization of self -reliance. In their adult lives, these individuals did not share these values as indicators of their quality of life but chose to use other forms of locomotion and to use care attendants to complete activities of daily living in order to free up time and energy to pursue other more valued activities. The conclusions from Kibeles (1989) study mirror some of the conclusions made by Doolittle (1990) in her phenomenological study of the experience of recovery following stroke. The participants in Doolittles st udy defined recovery as the return to activities important to the individual. Functional abilities in themselves we re not considered important to recovery. However, the return to purposeful activity was found to be an important indicator of stroke recovery. Similarly, Cardol et al (1996) found in their study with amyot rophic lateral sclerosis patients that meaningful and purposeful activity positively contributed to perceived quality of life. Clarke and Black (2005) studied more specifically post-stro ke quality of life and the relationships of residual physical and cognitive deficits also using qualitative interview process. They identified common elements of adapting to functional disability, which resulted in high levels of self-perceived quality of life. Co mmon elements involved in this process included reordering priorities to focus on activities impor tant to the individual, drawing on personal, community, and social support resources to conti nue some level of customary activity, retaining salient aspects of individual identity and main taining a sense of conti nuity in his/her life.

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57 Independence and Mastery Different from an objective measurement of functional ability, independence and mastery issues are subjective issues related to the pe rceptions the individual has concerning his/her abilities based on comparisons with pre-disabil ity status and with societal expectations. Secrest and Thomas (1999) phenomenological study of quality of life following stroke found that a stroke survivors li fe is characterized by (a) a pe rvasive feeling of loss, (b) a perception that all activity required tremendous e ffort to accomplish, ( c) being in control versus out of control, and (d) connection with ot hers versus disconnection from others. Independence/dependence issues often centered on comparisons of life before and after the stroke. Much of the perceived disability de scribed by the participants was unseen by others observing the stroke survivor. Bendz (2003), in a phenomenologic study of stroke survivors in the first year of rehabilitation, al so identifies the subject ive issues of stroke recovery. In this study stroke survivors described a fe eling of loss of control, fatigue and a fear of relapse. Their health care providers ignored these aspects of the stroke, focusing on reduced function and training. Robinson-Smith (2002) describes the con cept of self-care self-efficacy, which is the confidence a person has in his or her ability to perform relevant self-care activities. This is distinct from the persons actual functional abil ity. In a study of self -care self-efficacy and quality of life of stroke survi vors, she found that self-care self -efficacy was strongly correlated with quality of life and depression. Where as functional ability was only modestly correlated with quality of life. In studies of individuals with chronic illne sses including multiple sclerosis, rheumatoid arthritis and diabetes, higher leve ls of perceived quality of life have been associated with higher

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58 levels of perceived independence (Burckhardt et al., 1989), lower levels of perceived dysfunction and higher levels of perceived mastery and control over ones life (Jeffrey, 1989). These studies indicate that functional ability includes more than the characteristics that can be measured on objective physical functioning measures. Functional ability in areas valued by the individual determines the level of meani ngful function the individual can perform. The concept of meaningful function arises from the subjective asp ect of functional abilities and reflects the meaning of the disability to the indi vidual, the individuals be liefs and values as well as sociocultural mores. Qualitative studies of qu ality of life indicate that level of meaningful function is related to ones perc eived level of quality of life.

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59 CHAPTER 3 METHODOLOGY Introduction A goal of this study was to advance the understa nding of the concept of quality of life by exploring the relationships of selected variab les as described by Day and Jankey. The variables of particular interest are functional ability a nd level of meaningful function as perceived by stroke survivors who are from three months to five years post stroke. Day and Jankeys (1996) model of the evaluation process of quality of life describes the proce ss that an individual uses to evaluate ones quality of life and takes into consideration li fe circumstances, personality, and individuals goal and achievements, as well as the external reac tions of the environment. The specific questions addressed by th is research are: (a) are ther e relationships among perceived quality of life, meaningful functioning, functiona l ability, depression, soci al support, age, and length of time since stroke; (b) wh at terms do stroke survivors use to describe quality of life; (c) what terms do stroke survivors use to describe m eaningful function; and (d) to what extent do the variables meaningful func tioning, functional ability, depre ssion, social support, age, and length of time since stroke pred ict quality of life in stroke su rvivors? Because the variables depression and social support have c onsistently been found to be corr elated with quality of life of stroke survivors, these variables have been includ ed in the study in order that their influence can be taken into consideration. This chapter is divided into four sections. In the first section the subject sample is described. The second section contains a descri ption of study design and procedures used to

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60 collect the data. The instruments for data collecti on are described in sectio n three. Section four includes a description of the statistica l analysis of the research questions. Subject Sample Subject Selection Permission to conduct the study was first obt ained from the Institutional Review Board of the University Health Center. Following appr oval, a convenience sample of several possible recruiting sources was identified. These sources included health care providers practices, home health agencies, community agenci es including stroke support groups and senior citizen centers, community newsletters, and newspapers. Recrui ting was accomplished by posting flyers and by talking to community groups. Permission to recr uit subjects from the patient populations in health care provider practices, home health agen cies, and community organization was obtained from each provider or the manager of each orga nization. Recruiting began in February, 2003 and continued until June 1, 2006, when 70 subjec ts had completed all instruments. Inclusion/exclusion criteria To be included in the study sample, a potential subject had to: (a) be between the ages of 18 years to 85 years, (b) be three months to 5 year s post-stroke by self-repor t, (c) have a residual stroke deficit, (d) be sufficiently alert and oriented to be able to respond and interact with others, (e) have sufficiently intact English language skil ls to communicate with the investigator, and (f) live in a home setting. Persons who have had the stroke secondary to head trauma (as determined by selfreported history) and those who ha d co-existing health problems th at also result in functional deficits (such as: lower extremity amputation, pulmonary or cardiac dise ase interfering with activity, terminal illness) were excluded from the study.

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61 Demographic characteristics The demographic characteristics sex, race, ag e, marital status, number of children, living arrangements, health of spouse, occupation, income, education a nd months since stroke of the sample are presented in Table 3-1. Forty ( 57.14%) of the subjects we re male and 30 (42.86%) were female. Sixty-one of the subjects (87%) were white/Caucasian. Age range was from 45 yrs to 80 yrs with a mean of 63.67 yrs. The majority of the sample was between 60 and 85 years of age. Sixty-three percent of the subjects were between the ages of 60-79 years. The majority of the subjects were married (61%) and of these, 62% (44 subjects) lived with their spouses. The majority of the spouses were in good health (80 %), but twenty percent (9 spouses) of the spouses also had significant health problems. The majority of the subjects had chil dren (89%). Only 11% lived with a child. Twenty-three percent (16 subject s) of the subject s lived alone. The majority of the subjects (85.71%) were unemployed following th e stroke. Six subjects (8.71%) were able to return to full time employment in the same occupa tion as prior to the stro ke. Eighty-nine percent of the subjects (62 subjects) reported an a nnual income of $40,000 or less, with 34% (24 subjects) reporting an income of less than $20,000. Educational level ranged from 9 years of schooling to post-graduate educa tion, with a mean of 12.97 years of education. The majority of the subjects (49%) were high school graduates. The subjects range d from 3 months to 55 months post stroke. Mean length post st roke was 28.7 months. The majority of subjects (30%) were from 3 to 12 months post stroke. However, fifty-four percent were more than 2 years post-stroke. Deficit characteristics All subjects had some degree of residual neur ologic deficit. These data are presented in Table 3-2. Sixty-seven (95.71%) su bjects had a motor deficit. The majority of subjects (61.43%) had right side deficits. Fifty-two percent of the subjects (37 subject s) had residual right

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62 hemiparesis, while 8.57% (6 subj ects) had residual to tal right sided hemiplegia. Right sided hemiparesis or hemiplegia are often associated wi th aphasia. Fifty percen t (35 subjects) of this sample were aphaisic to some degree. Twen ty-two subjects (31.43%) had residual cognitive deficits. Forty-six subjects (65.71) su bjects had more than one deficit. Co-existing health problems These data are presented in Table 3-3. Re view of systems questionnaire was used to assess each subject for co-exis ting health problems in the areas of sight (the presence of difficulty with vision to read, watch television, purs ue hobbies or drive), hear ing (the presence of difficulty to hear radio/televi sion, to carry on conversation, use the telephone), cardiovascular disease (the presence of angina or peripheral vascular disease), re spiratory disease (the presence of asthma, shortness of breat h, need for oxygen), musculoskele tal disease (the presence of musculoskeletal pain) and other neurological diseases (seizure disorder, Parkinsons Disease, multiple sclerosis) that could also cause functiona l deficits. No subject had a co-existing health problem severe enough to limit the subjects acti vity. Twenty-five subjec ts (35.71%) denied coexisting health problems. The most prevalent co -existing health problem was musculoskeletal pain, followed by cardiovascular disease, vi sual problems, and respiratory disease. Study Design and Procedures Information about the study was communicated to potential subjects using a flyer. The flyer included the explanation that the purpose of the resear ch is to explore the effect of a stroke on the individual. An estimation of the time co mmitment involved was given. Instructions on the flyer directed potential subjects to contact the researcher in the following ways:

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63 1. Telephone the researcher at her home telephone number. Upon calling this number, either the researcher answered the telephone or the call was answ ered by an answering machine with a message (in the researchers voice) as king the caller to please leave name, telephone number, and a message and the call would be returned as soon as possible. 2. Contact the researcher at her email addres s listed on the flyer. The potential subject was instructed to leave his/her name and a m eans of contacting the individual on the email message. When the researcher received the name and means of contacting a potential subject, the researcher contacted the potenti al subject by telephone or email (see no. 2, flyer information). The researcher introduced herself as a register ed nurse who was pursuin g a doctoral degree in nursing and explained that the re search was being done to explor e the effect of stroke on the individual. The researcher agai n described the purpose of th e study and the data collection methods. The potential subj ect was told that he/she would be asked to complete from one to eight questionnaires about the st roke and his/her life. Since it was possible that a potential subject would not meet inclusion criteria or would meet exclusion cr iteria, some potential subjects could have only completed the screenin g instruments. Because of this, the time commitment varied from 15 minutes to 90 minutes. Potential subjects were informed that (a) participation was voluntary, (b) they were free to discontinue participa tion at any point, (c) a written consent would be obtained, which would include consent to audio-tape responses to interview questions, and (d) numeric al codes would be used to iden tify an individuals responses, protecting confidentiality. When a person agreed to participat e in the study, an appointment was made to meet with the potential subject with in a week at a time and place convenient for the potential subject. At the first face to face meeting, the research er again introduced herself as a

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64 registered nurse who was pursuing a doctoral degr ee in nursing and explai ned that the research was being done to explore the effect of stroke on the individual. Written consent was obtained (Appendix A). The researcher assigned each subject a numerical code. This numerical code was used on all documents pertaining to that individu al subject in order to protect the subjects confidentiality. The researcher administered the instruments using an interview format in the following order: 1. Mini Mental Status Exam (MMSE)(appendix B). The instrument was scored prior to continuing. The potential subject had to score 18 or higher to be included in the study. If a potential subject did not score 18 or higher, the researcher ende d the data collection by saying the following: Thank you very much for agreeing to participate in this study. This information will be very helpful. If the potential subjec t asked why only one questionnaire was completed, the researcher explained to him/her that becau se of the way the study was designed individuals would be asked to complete different combina tions of questionnaires. This one questionnaire was the only one he/she was to complete. 2. The demographic questionnaire (appendix C). 3. The review of systems questionnaire (a ppendix D). The potential subject could not have other illnesses or conditions resulting in functional deficits. If the potential subject had a functional deficit due to other illnesses or conditi ons, the researcher ended the data collection by saying the following: Thank you very much for agreeing to participate in this study. This information will be very helpful. If the potential subject asked why only three questionnaires were completed, the researcher explained to hi m/her that because of the way the study was

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65 designed, individuals would be asked to complete different combinations and numbers of questionnaires. These three que stionnaires were the only one s he/she was to complete. 4. The Barthel Index (BI) (appendix E). 5. Quality of Life Survey (QOLS) (appendix F). 6. Cantrils Self-Anchoring Striving Scale for Quality of Life (SASS/QOL) (appendix G). The subject was asked to desc ribe his/her best possible life th en the worst possible life. The subject was then shown a model of a ladder with ten rungs. The bottom rung will be numbered and the top rung was numbered . The subj ect was asked: if th e best possible life as you just described it is the top r ung, a , and the worst possible life as you just described it is the bottom rung, a , where on this ladder do you stand today? Once the subject answered this question, he/she was asked and where on this ladde r did you stand before you had the stroke? Both the descriptions of the best possible li fe and the worst possibl e life and the subjects response to the questions were audio-taped and th en transcribed verbatim. The audio-tapes were erased as soon as the data were transcribed. 7. Cantrils Self-Anchori ng Striving Scale for Meani ngful Function (SASS/MF) (appendix H). The subject was asked to describe the five most meaningful and/or important activities in his/her life currently. The subject was then asked to de scribe his/her life in the worst possible light in terms of these identified impor tant activities. The s ubject will then shown a model of a ladder with ten rungs. The bottom rung was numbered and the top rung was numbered . The subject was asked: if a the top rung is a and represents the best possible life in terms of the activities most meaningful to you and the bottom rung, a , represents the worst, where on this ladder do you stand today? Once the subject answered this question, he/she was asked and where on this la dder did you stand before you had the stroke?

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66 Both the descriptions of the most meaningful/important activities and the subjects response to the questions were audio-taped and then transcri bed verbatim. The audio-tapes were erased as soon as the data were transcribed. 8. The Center for Epidemiologic Studies -Depression (CES-D) (appendix I). If the potential subject achieved a score of 21 or greater, indicating a possible depression, the researcher indicated to the potenti al subject that the score on this instrument indicated that he/she may have some depression. The researcher furthe r discussed this with the individual and urged the individual to discuss this with his/her primary care provider 9. The Perceived Social Support from Fr iends (PSS-FR) and the Perceived Social Support from Family (PSS-FA) (appendi x J) to measure social support. The entire session was completed in 30 to 90 mi nutes. If the subject stated he/she was tired or began to appear fatigued, he/she would ha ve been given the option to rest or to schedule another meeting to complete data collection, or to withdraw from the stud y. If a second meeting would have been needed, it would have been sc heduled as soon as possible following the first visit and at the convenience of the subject. Because orientation can fluctuate, the MMSE would be repeated at the beginning of the second sess ion to reassess orient ation. However, a second meeting was not needed by any subject. Instruments Mini Mental State Exam The Mini Mental State Exam (MMSE) (Appendi x B)was used to assess the orientation and ability of potential subjects to understand and to respond to que stions, as well as to measure of the cognitive portion of functi onal ability. Developed as a sc reening tool to quantitatively assess the severity of cognitive impairment and to document changes in cognition over time, the

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67 MMSE is an 11 item interview administered tool. The score is the sum of correct responses and ranges from 0 to 30. A score of 23 or less is generally accepted as indicating the presence of cognitive impairment. The severity of the cogni tive impairment can be classified into three levels: 24 to 30 = no impairment; 18 to 23 = mild cognitive impairment; and 0 to 17 = severe impairment (Tombaugh & McIntyre, 1992). The MMSE can be administered in 5 to 10 minutes. The MMSE was used to measure cognitive functiona l ability and to document that the subjects cognitive abilities were sufficiently intact to allow the subject to understand and inte ract with the researcher (for this purpose a scor e of 18 or higher was required). Reliability The MMSE has good reliability. Test-retest reliability coeffi cients range from .80 to .98 Inter-rater reliability are reported as .82 and internal c onsistency as .96 (Anthony et al., 1982; Tombaugh & McIntyre, 1992). Validity The MMSE has been subjected to numerous validity studies. Construct validity is supported by the ability of the MMSE to distingu ish among people with diagnoses of delirium or dementia, depression, schizophrenia and elderly control subjects with no psychiatric diagnosis (Fraser, 1988). Evidence of conve rgent construct validity is the fi nding of statistically significant and high correlations (.83 to .88) between the MMSE and three measures of cognitive impairment. In addition, a statistically si gnificant correlation betw een the MMSE and the Wechsler Adult Intellig ence Subscale has been found. Discriminant construct validity is supported by a low negative corre lation (-.38) reported with a depression measure (Foreman, 1987; Tombaugh & McIntyre, 1992).

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68 The MMSE is in the public domain, so no perm ission to use the instrument was required. The MMSE was chosen for this study because it has been widely used and validated in screening for cognitive impairment. Demographic Questionnaire A demographic questionnaire (Appendix C) was used to gather data on selected factors which constitute personal attributes in Day and Jenkeys model. These attributes included sex, race, age, marital status, number of children, living arrangements, spouses health, occupation, income, educational level, and months post stroke. Review of Systems A brief review of systems (appendix D) was obtained to determine the type of deficit present following the stroke and to determine if the subject had other co-existing health problems that also interfered with functional ability. Co -existing health problems, such as peripheral vascular disease that interferes with walking, pulmonary or cardia c disease that interferes with activity, terminal illness, may also result in functional deficits or worsen the deficit secondary to the stroke. The presence of other health problem s severe enough to affect functional ability may also introduce other unk nown variables that affect quality of life. Therefore, individuals with coexisting health problems resulti ng in functional deficits were excluded from this study. The review of systems included assessment these sy stems: neurological, special senses/hearing and sight, cardiovascular, respir atory, and musculoskeletal. Barthel Index The Barthel Index (BI) (appendix E) was used to measure functional ability in this study. It has been widely adopted as a measure of di sability. It was designe d to measure level of independence in basic activities of daily living (Neal, 1998). A 100-point scale is used to create a weighted measure of self-car e activities of feed ing, grooming, bathing, dressing, toileting,

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69 bowel/bladder continence, walking, climbing stairs and chair/bed transfers. Each activity is rated a 0, 5, 10, or 15 depending on the activity a nd whether the individual needs assistance in performing it. Though the scores for each activity are often combined into a total score, the total score is not as meaningful as reporting the score for each activity, since the individual items indicate where the deficiencies lie. If a total sc ore is used, there is a possible range in scores from 0 (total dependence) to 100 (total inde pendence). A score of 100 indicates that the individual is continent, feeds himself, dresses himself, gets up out of bed and chairs, bathes himself, walks at least a block, and can climb stai rs. This does not mean that the individual is able to live alone. He/she may not be able to pe rform any of the more complex activities of daily living such as cooking, keeping house, and m eeting the public/communicating (Kane, 1997; Mahoney & Barthel, 1965; Moinpour, McCorkle, Sa unders, 1988; Neal, 1998) The literature does not specify whether actual performance or cap acity should be measured. The instrument may be administered by direct observation, by self-report of abilit y, or by report of a care-giver (Korner-Bitensky & Wood-Dauphinee, 1995; Neal, 1998). In this study the instrument was administered by self-report of the subjects ability. Reliability The BI has good reliability. The BI has been found to have an internal consistency (Cronbachs alpha) ranging from .94 to .98 (Korner-Bitensky & Wood-Dauphinee, 1995; Moinpour, McCorkle, & Saunders, 1988; Shah, Coope r, & Maas, 1991). Test-retest reliability coefficients have ranged from .89 to .98 (Shah, Cooper, & Maas, 1991). Validity In terms of content validity, the BI has face va lidity. The BI measures what it purports to measure, activities of daily living. Construct valid ity is the extent to which the instrument will discriminate between those who possess and those who do not possess the attribute being

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70 measured. Construct validity is supported by f actor analysis with a varimax rotation which showed a high degree of communality attributed to each item with a minimal acceptable value of 0.44 to 0.77 (Shah, Cooper, & Maas, 1991). Convers ely, construct validity can be questioned based on a study by McPherson & Pentland (1997) in which the BI was unable to identify disability in a group of 54 trau matically brain-injured patients Criterion-related validity includes both predictive validity and concurrent validity. In terms of predictive validity, a Barthel score lower than 40 was predictive of fewer discharges home and scores higher than 60 were predictive of a shorter length of stay. In addition, in a study of 486 stroke rehabilitation patients, the BI was able to predict six-month post-stroke mo rtality (Korner-Bitensky & WoodDauphinee, 1995). Concurrent validity was supp orted in a study of 150 patients 1 year poststroke in which the BI correla ted reasonably well with the Offi ce of Population Censuses and Surveys (OPCS) (Wellwood, Denniss, & Warlow, 1995). The BI is in the public domain, so no permi ssion to use the instrument was required. The BI was chosen for this study because it has been widely used and validated in screening for functional ability and is brief. Quality of Life Survey In order to strengthen the va lidity of the study by triangula ting measures, qua lity of life was measured using two instruments, the Qual ity of Life Survey (QOLS) (appendix F) and Cantrils Self-Anchoring Striving Scale (SASS) (appendix G). The Quality of Life Survey (QOLS) is a 16 item Likert-type rating scale that measures satisfaction in five domains of quality of life : physical and material well-being; rela tions with others; soci al, community, and civic activities; personal development and fulfillment; and recreation. Using a 7-poi nt rating scale, the subject is asked to rate how well these quality of life items are met, ranging from terrible (1) to

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71 delighted (7). Total score can range from 16 to 112. A higher score represents a higher quality of life (Burkhardt & Anderson, 2003). The scale was ad ministered using an interview format and took approximately 5 minutes to complete. Reliability The QOLS has been found to have acceptable reliability. The QOLS has been found to have an internal consis tency (Cronbachs alpha) ranging from .82 to .92. Test-retest reliability coefficients have been slightly low ranging from .78 to .84 at th ree week intervals and .76 at a six week interval (Burchhardt, Woods, Schultz, & Ziebarth, 1993, 1989). This may be due to the changing nature of perceived quality of life. Validity Content validity is supported by the fact that it was develope d using inductive research to identify the domains of quality of life in a sample of 3000 adults. In addition, the domains identified by this research are consistent with the domains identified by research done by Ferrans and Powers (1985) and Ferrell (1991). Convergent construct validity of the QOLS has been assess ed in a study comparing the QOLS with other measures of quality of life. In assessing convergent validity, results on the QOLS were correlated with results on the Life Sa tisfaction Index, a tool that assesses a persons global life satisfaction. The correlation coefficients ranged from .67 to .75. In assessing discriminant construct validit y, results on the QOLS were correlated with results on the Duke-UNC Health Profile (DUHP), the Arthritis Impact Measurement Scales (AIMS), and the Ostomy Adjustment Scale (OAS). The Duke-UNC Health Profile is a scale designed to assess adult health status in four dimensions: sy mptom status, social function, physical function, and emotional f unction. The Arthritis Impact Me asurement Scales is a scale used with persons with arthritis to assesses heal th status in three dime nsions: physical function,

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72 psychological function, and pain). The Ostomy Adju stment Scale is used to measure adjustment to physical, psychological, and soci al changes that occu r after ostomy surgery. Correlation of the DUHP with the QOLS ranged from .25 to .61. Co rrelation of the AIMS with the QOLS ranged from -.29 to -.39. Correlation of the OAS with the QOLS ranged from .36 to .43 (Burchhardt, Woods, Schultz, and Ziebarth, 1993, 1989). Because thes e scales measure health status primarily and quality of life is related to, but not the same as, health status, low to moderate correlations were anticipated. The QOLS was used in this study to provide a domain-specific measurement of quality of life. It was chosen because it has been used a nd validated with chroni c illness populations and because it is easy to administer and is brief. The QOLS is in the public domain, so no permission to use the instrument is required. Cantrils Self-Anchoring Striving Scale In this study both quality of life and meaningful function we re assessed using Cantrils Self-Anchoring Striving Scale (S ASS) (Appendix G and H). Each subject completed a separate scale for quality of life and one for meaningful function. The SASS was originally developed for use in a multi-national, multi-cultural study to asse ss a persons general sense of well-being at three points in time: past, present, and future The scale was based on the premise that each individuals expressi on of concerns, values and life percepti on can be used to establish top and bottom points of a self-defined measurement continuum. Cantril (1965) noted that it is particularly adaptable for studyi ng highly subjective concepts. The SASS consists of a representation of a 10-step ladder with the top and bottom rungs of the ladder representing each extreme of the c onstruct being measured. Self-anchoring refers to the methodology of asking the person to define/des cribe each end of the continuum. Thus, the scale results in both numerical and narrative data. The scale has b een used to measure quality of

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73 life of individuals undergoing hemodyalisis, indivi duals with coronary artery disease, with COPD, and with seizure disorder (Hartshor n & Byers, 1994; Hoothay, DeStefano, Leary, & Foley-Hartel, 1990). Carpenter (1996) adapted the methodology and scale to study self-esteem. Reliability Because the endpoints of the scale are identi fied by each subject, the numerical ratings reflect individual criteria. Theref ore, a rating by one person is not the same as a rating by another person. In other words, a rating of seven for one person does not necessarily mean the same thing as a rating of seven from another. For th is reason, traditional definitions of reliability can not be applied to this scale (C antril, 1965). Stability of the scale has been supported by testretest reliability coefficients ranging from 0.65 of a 2 year period to 0.92 over a 2 week period (Cohen, 1988; Carpenter, 1996). Validity In a study of self esteem, convergent cons truct validity was supported by a correlation between the Rosenberg Self-Esteem Scale a nd the SASS ranging from 0.58 and 0.65 from a group of graduate students to 0.75 from a group of women with breast can cer. Also, a correlation was found between the SASS and Ryffs Self-Ac ceptance Scale 0.64 in a group of women with breast cancer and 0.76 in a group of age-matc hed healthy women. The SASS was also comparable to the Rosenberg Self-Esteem Scale in differentiating betwee n individuals with high esteem versus low esteem (Carpenter, 1994) The SASS was chosen for use in this study because of its ability to reflect the subjective and multidim ensional nature of the constructs quality of life and meaningful function. By allowing the subject to define the scales an chors on an individual basis, there is an improved opportunity for unde rstanding the meaning of the numerical rating. The SASS is in the public domain, so no perm ission to use the instrument is required.

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74 Center for Epidemiological Studies-Depression Scale Depression is a factor that was included in this study because it has been consistently associated with variations in quality of life. The Center for Epidemiological Studies-Depression scale (CES-D) was used to assess depression (A ppendix I). This instru ment is a twenty-item scale that measures the presence and severity of symptoms of depression over the past seven days, focusing primarily on cognitive and a ffective symptoms (Radloff & Locke, 1986). Respondents are asked to rate th e frequency of experiencing a sy mptom during the past week. Response categories range from zero (symptoms occu r rarely) to three (sym ptoms have occurred from 5 to 7 days in the past week), thus wei ghting the response based on the number of times the symptom occurred in the past week. Instrument scores range from zero to sixty. A score of greater than 16 is indicat ive of depression (Radloff, 1977). In creased severity of depression is indicated by higher scores (Radloff, 1977). The following ranges will be used: (a) 0 to 15= not depressed, (b) 16 to 20 = mildly depressed, (c ) 2130 = moderately depressed, (d) 31-60 = severely depressed. The CES-D can be administered in either a self-report or interview format. The instrument can be completed in approximately five to ten minutes. In this study, the CES-D was completed using an interview format. Reliability The CES-D has demonstrated good reliability in terms of in ternal consistency. Radloff (1977) reported a Chronbachs alpha .90 for adults with a psychiatric diagnosis and .87 for adults without a psychiatric diagnosis. In addition, using Spearman Brown techniques, reliability coefficients of.92 for adults with a psychiatric diagnosis and .87 fo r adults without a psychiatric diagnosis were found. Test-retest correlations have been lower (.45 to .70), as would be expected since this instrument measures current depression (Radloff, 1977).

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75 Validity The CES-D has demonstrated criterion-related validity in several st udies. In a study of 487 community-based subjects aged 55 to 85 years the CES-D was able to identify individuals who had been previously diagnosed with depre ssion using the Diagnostic Interview Scale. The CES-D demonstrated a weighted sensitivity of 100% and specificity of 88% ( Beekman, Deeg, Van Limbeek, Braam, De Vries, & Van Tilburg, 1997). Using the Structured Clinical Interview for the Diagnostic and Statistical Manual of Mental Disorders as the diagnostic criterion, the CES-D demonstrated a sensitivity of 92% and a specificity of 87% in a population of 130 patients aged 60 years or older (Lyness, No el, Cox, King, Conwell, & Caine, 1997). Parikh, Eden, Price, & Robinson (1988), us ing a standardized interview for affective, cognitive, physical and social functioning as the crite rion in a sample of 80 stroke survivors, found that the CES-D had a specificity of 90% and a sensitivity of 86% In addition, convergen t construct validity has been supported by a correlation of .81 between the CES-D and the Beck Depression InventoryShort Form in a population of French adults (Cathbras, Mosnier, Levy Bouchou, and Rousset, 1994). Shinar et al. (1986), while studying stroke patients, reported correlations of .57 and .82 when comparing the CES-D with a psychiatric battery of unspecified tests for depression. The CES-D was chosen for this study because it (a) has been te sted with community samples of older adults ( B eekman, Deeg, VanLimbeek, Braam, De Vries, & Van Tilburg, 1997; Lewinsohn, Seeley, Roberts, & Allen, 1997; Lyne ss, Noel, Cox, King, Conwell, & Cain, 1997); (b) has been used in several studies of stroke survivors; and (c) is brie f and easy to administer. The CES-D is in the public domain, so no perm ission to use the instrument is required. Perceived Social Support From Family and Friends Social support was measured using the Percei ved Social Support From Family (PSS-FA) and Friends (PSS-FR) (0 Appendix J). This scal e was designed to measure the extent to which

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76 an individual perceives that his/her needs for su pport, information, and feedback are fulfilled by friends and family. This instrument consists of two subscales, each containing twenty items. The PSS-FA subscale measures perceived support from family, while the PSS-FR measures perceived support from friends. The instrument uses a yes, no, dont know format. The scores for each subscale ranges from 0 to 20, w ith higher scores indicat ing higher levels of perceived support. A separate score for each s ubscale is obtained (Lyons, Parrotta, & HancherKvom, 1988; Procidano & Heller, 1983). The instrument can be self-administered or administered using an interview format and takes approximately 10 minutes to complete. In this study, the instrument was administer ed using an interview format. Reliability The PSS-FA and PSS-FR are reliable measures. In a sample of college undergraduates (n=222) a Chronbachs alpha of .90 for the PSSFA and .88 for the PSS-FR were obtained. In addition test-retest reliability coefficient was .83 over a one mont h interval (Procidano & Heller, 1983). In samples of chronic psychiatric patients (n=74), diabetic patients (n=53), and college undergraduates (n=92), Chronbachs alpha range d from .89 to .92 for the PSS-FA and .84 to .92 for the PSS-FR (Lyons, Parrotta, & Hancher-Kvom, 1988). Validity Procidano and Heller (1983) c onducted construct validation st udies for the PSS-FA and PSS-FR with samples of college students. They found the tool to be re lated to a range of psychopathology and social traits. 1. A group of subjects (n=66) completed the PSS-FA and PSS-FR in addition to the Life Experience Survey, the Social Network Ques tionnaire, and the Langner symptom screening instrument. The Life Experience Survey was not re lated to either the PSS-FA or PSS-FR. Scores on the PSS-FA and PSS-FR had a low negative corre lation of -.29 and -.27, respectively, with

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77 Langner symptom scores, indicating that those with higher sympto m scores had lower perceived social support. Some social ne twork variables were related to perceived social support. The length of time a person has known members of the network showed a low negative correlation with PSS-FR of -.28. reciprocity in providing tangible support plus the length of time of knowing a person in the network was the best predictor of the PSS-FR score (R=.33). The best predictor of the PSS-FA score were intangible support plus the tangible support scores (R= .43). 2. A second group of college students (n=63) completed three scales of the California Psychological Inventory: the good impression scale, sociability scale, and the social presence scale. In addition, social competence was asse ssed using the Dating A ssertion Questionnaire and dependence was measured using the Interpersonal De pendency scale. Low correlations were found between the PSS-FR and the good impression s ubscale (r=.23) and the sociability subscale (r=.33). A moderate correlation of .51 was found between the PSS-FA and the social presence subscale. There was no relationship between the PSS-FA and these measures. A low to moderate correlation was found between the Dating Assertion Questionnaire and the PSS-FR and PSS-FA (r=.40 and .35, respectively). A moderate ne gative correlation was found between the Interpersonal Dependency S cale and the PSS-FR(r=-.43). 3. A third group of college students (n=80) completed the short form MMPI and the Marlowe-Crowne Social Desirabi lity scale. The PSS-FR showed no significant correlation with the short form MMPI or with the Social Desi rability. However, there was a low negative correlation between the PSS-FR and two subscales of the short form MMPI, the psychasthenia scale (r= -.23) and the schizophrenia scale (r= -.20). There was a low positive correlation between the PSS-FA and the short form MMPI (r= .20), the Social Desirability Scale (r= .29). There was also moderate positive correlations be tween the PSS-FA and three subscales of the

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78 short form MMPI, the depression scale (r= .43 ), the psychasthenia scale (r= .33), and the schizophrenia scale (r= .33). Lyons et al. (1988) performed additional vali dity studies with the PSS-FA and PSS-FR with a group of chronic psychiatric patients (n=7 4), a group of diabetic patients (n=53), and a group of college students (n=92). There was a moderate correlation of .40 between the PSS-FA and the PSS-FR for the combined group (n=219) of The correlation remained moderate within the chronic psychiatric patient group (r=.40) and in the coll ege student group (r=.42). The correlation fell to .18 for the diabetic patient group. When comparing the scores among the groups, there were significantly higher levels of perceived family support (PSS-FA) for the diabetic and college groups compared with the chronic psychiatric patients. There was no difference between the PSS-FA score means betw een the college student group and the diabetic group. There was a significant difference in the pe rceived social support from friends (PSS-FR) in the college group as compared with the chronic psychiatric patients. The low to moderate correlations obtained in these validity studies indicate that the PSSFA and PSS-FR measure related but separate constructs and does le nd support to construct validity of the scale. Perceived social support from family and from friends is related to certain social network characteristics, in addition to so me personality traits and may be influenced by mood states and illness. The PSS-FA/FR is in the public domain, thus permission to use the instrument is not required. The PSS-FA/FR was chosen for this stu dy because it has been used in studies of populations with chronic illness and is brief. Data Analysis Descriptive statistics, includi ng frequencies, ranges, and means were used to summarize all data. Correlational analysis was explored among the variab les measuring quality of life

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79 (QOLS and SASS/QOL), functiona l ability (BI and MMSE), mean ingful function (SASS/MF), depression (CES-D), social support (PSS/FR and PSS/FA), and moths post stroke. Data categories for the variables post-stroke defi cits and co-existing he alth problems were combined to maximize representation of each categor y in the data analysis. Data for post-stroke deficits were combined and coded as to the presence or absence of a motor deficit, aphasia, and perceptual/cognitive deficits. Data for co-existin g health problems were combined and coded as to the presence or absence of cardiovascular dise ase, respiratory diseas e, and musculoskeletal disease, and visual changes. To further explore relationships of the variables, multiple regression analysis was performed using the general linear model. The descriptive data were analyzed using a word content analysis procedure that uses standard word processing programs or other read ily available software to generate word lists from descriptive text data, such as interview data (Ryan and We isner, 1998). The word lists are then examined for patterns and are helpful in id entifying the relative impo rtance of a word or concept based on the number of times it appears in the text. Th is method has been used to identify patterns in bodies of text and to iden tify probable conceptually important concepts in text without relying on predetermi ned categories or theory to an alyze the data. However, word analysis does not produce a holistic interpretation of descriptive data because the words are taken out of context; thus, the meaning underlying the text is lost. Becau se of this, word analysis is often used an initial step in descriptive data an alysis or in conjunction wi th ethnographic or other sources of data. In this case, the word analysis is being combined with statistical analysis obtained from the previously described instruments. Descriptive data were collected when co mpleting the SASS/MF and SASS/QOL. These data were audio-taped; the interviews transcri bed verbatim. All audiot apes were transcribed

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80 verbatim using the word processing program (Mic rosoft) Word. A separate folder was created for each subject. The portion of the transcript fo r each subject that resulted from answering the questions on quality of life was copied and past ed into a separate file and named Subject X QOL TEXT. From this text any text spoken by the investigator was deleted. This file was placed in the corresponding subjects folder. This procedure was repeated for the portion of the transcript for each subject that resulted from answering the questions on meaningful function and named Subject X MF TEXT. The program Wor d Counter for Microsoft Word 2.17 was used to obtain a total word count for the QOL TEXT . The program also identified all unique, (i.e., different) word forms and the frequencies of each unique word form for the QOL TEXT, presenting the word count frequency report in de scending rank order.. The results were saved into a file named Subject X QOL WORD CO UNT and were placed in the corresponding subjects file. This procedure wa s repeated for the MF TEXT. Data were analyzed by quality of life and meaningful function for all subjects, by age group, and by months post CVA. For each data an alysis category the appropriate subjects for each category were identified. The QOL TEXT f ile for each identified subject was copied and pasted into a new file that contained the files fr om all the identified subjects. A word count with word frequency was performed for each new data analysis category. In an attempt to limit the number of terms used in the analysis, all unique terms occurring two or fewer times were deleted from each file. On examining the remaining term s, there were a large volume of words which, taken out of context and in isol ation, had little meaning. It was felt that including these in the analysis would not provide much insight into the research questi ons. The majority of these words were identified on a list of mo st commonly used English words. The first 100 of the most commonly used English words account for one half of all material printed in English (Fry, Kress,

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81 & Fountoukidis, 2000). In order to remove the most words that were not beneficial to the analysis, the 125 most commonly occurring used E nglish words were deleted from the analysis. Occurrences of different word forms for the same wo rd, such as pleural or past-tense forms, were combined in the word count and the rank for th e word adjusted accordingly. This procedure was repeated with the MF TEXT file. The data analysis was performed from this file.

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82 Table 3-1 Selected demographic characterist ics of the sample of stroke survivors Characteristics Number Percent Sex Male 40 57.14 Female 30 42.86 Race White/Caucasian 61 87.14 African American 6 8.47 Native American 3 4.29 Age 40 49 yrs 6 8.57 50 59 yrs 17 24.29 60 69 yrs 27 38.56 70 79 yrs 17 24.29 80 85 yrs 3 4.29 Marital Status Single (never married) 8 11.42 Married 43 61.43 Divorced 13 18.57 Widowed 6 8.57 Number of children None 8 11.43 1 16 22.86 2 20 28.57 3 13 18.57 4 13 18.57 Living arrangements Lives alone 16 22.86 Lives with spouse 44 62.86 Lives with child 8 11.43 Lives with other family member 1 1.43 Lives with hired care taker 1 1.43 Spouses health Not applicable 26 37.14 Well 35 50 Significant illness 9 12.86

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83 Table 3-1 Continued Characteristic Number Percent Occupation Unemployed 60 85.71 Employed full time in same occupation as prior to stroke 6 8.57 Employed full time in different occupation 1 1.43 Employed part time in same occupation as prior to stroke 0 0.0 Employed part time in different occupation 3 4.29 Income under $10,000 per yr 10 14.29 $10,000 to $20,000 per yr 14 20.00 $21,000 to $30,000 per yr 18 25.71 $31,000 to $40,000 per yr 20 28.57 $41,000 to $50,000 per yr 4 5.71 $51,000 to $60,000 per yr 1 1.43 $61,000 to $70,000 per yr 2 2.86 $141,000 to $150,000 per yr 1 1.43 Education 9-11 yrs 5 7.14 12 yrs 34 48.57 13-15 yrs 17 24.29 16 yrs 13 18.57 16+ yrs 1 1.43 Months since stroke 3-12 months 21 30.00 13-24 months 11 15.71 25-36 months 10 14.29 37-48 months 15 21.43 49-60 months 13 18.57

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84 Table 3-3 Samples co-existing health problems Health problem Number Percent None 25 35.71 Cardiovascular Not present 51 72.86 Present 19 27.14 Respiratory Not present 62 88.57 Present 8 11.43 Musculoskeletal Not present 48 68.57 Present 22 31.43 Visual loss/changes (not related to stroke) 14 20.00 Not present 53 75.71 Present 17 24.29 Table 3-2 Samples post stroke deficits Deficit Number Percent Hemiplegia/Hemiparesis 67 95.71 Right 43 61.43 Hemiparesis 37 52.86 Hemiplegia 6 8.57 Left 24 34.29 Hemiparesis 15 21.53 Hemiplegia 9 12.86 Aphasia 35 50.00 Expressive 27 38.57 Receptive 11.43 Visual loss/changes 14 20.00 Cognitive deficits 22 31.43 Other 1 1.42

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85 CHAPTER 4 RESULTS Introduction This was a descriptive correlational study designed to advance the understanding the concept of quality of life in stroke survivors by exploring the relationships of functional ability, meaningful function, and other selected vari ables as described by Day and Jankeys (1996) model of the evaluation process of quality of life. This model describes the process that an individual uses to evaluate ones quality of life and takes into consideration life circumstances, personality, and individuals goal and achievements, as well as the external reactions of the environment. The specific questions addressed by this research are: (a) are there relationships among quality of life, meaningful functioning, func tional ability, depression, social support; (b) what terms do stroke survivors use to describe qual ity of life; (c) what terms do stroke survivors use to describe meaningful function; and (d) to what extent do th e variables meaningful functioning, functional ability, depr ession, social support, age and length of time since stroke predict quality of life in stroke survivors? Becau se the variables depression and social support have consistently been correlated with quality of life of stroke survivors, these variables were included in the study so their influence could be taken into consideration. This chapter is divided into three sections. First, descriptive data from the instruments measuring quality of life, func tional ability, meaningful functi on, depression and social support are presented. Descriptive data pertaining to sa mple description were presented in Chapter 3. The second section explores the relationships among the variable s and addresses the first and fourth study questions. Correlations between variables are discusse d, as well as the results of multiple regression analysis. The third section ad dresses the second and third study questions and

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86 involves an analysis of descrip tive interview data. An analysis was performed of the words used by the subjects in discussing quality of life and meaningful function. Descriptive Statistics Complete data were available for 70 subjects. Table 4-1 presents the range, means, and standard deviation for the variables quality of life as measured by the QOLS, quality of life as measured by the SASS/QOL, meaningful functi on (SASS/MF), functional ability (BI and MMSE), depression (CES-D), so cial support (PSS/FA and PSS/FR ), number of months since stroke and age. Table 4-2 presents the fr equency distribution of these variables. Quality of Life Though the mean for the variable QOLS is 72.16, the frequency distribution demonstrates that 58.57% of the sample rated quality of life between 70 and 99. Similarly, the mean for the SASS/QOL is 7.29 but 64.28% of the sample ra ted quality of life above 7 out of 10. Meaningful Function The mean for the variable SASS/MF was 6.5 ( out of a possible 10). More than half the subjects (57.15%) rated their level of meaningful function as 6 out of 10 or less. Physical functioning as measured by the BI had a mean of 90.71 (out of a possible 100). The frequency distribution indicates that 55.71% of the sample had a BI of 100 and 80% of the samples BI score was 90 or above. Cognitive functioning as measured by the MMSE had a mean of 27.1 (out of a possible 30) and 92.86% of the sample scored in the no impairment category. Depression The variable depression was measured us ing the CES-D, which had a mean of 11.74. Fifty-one subjects (72.86%) scored from 0 to 15, which is in the not depressed category.

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87 Conversely, 27.14% of the subjects scored greater than 16, indicating the presence of depression. Eighteen percent scored in the modera tely to severely depressed range. Social Support The variable social support was measured using the PSS/FA (Per ceived Social Support from Family) and the PSS/FR (Perceived Social Support from Friends). The mean scores were 13.73 and 14.56 respectively. However, over half th e subjects rated their PSS/FA and PSS/FR (55.71% and 65.71%, respectively) from 15 to 20, out of a possible score of 20. Months Since CVA and Age The descriptive data for the variables M/C VA and age were discussed in chapter 3 and will not be repeated here. Examination of Relationships of the Variables Question 1 Question 1 explores the relationship of qua lity of life and the independent variables meaningful functioning, functional ability, depression, social suppor t, age, and length of time since stoke. Correlations among all variables were determined. In addition, the data were also examined for correlations between quality of life, income, education, and number of children. These data are presented in Table 4-3. The dependent variable, quality of life was m easured using a domain specific instrument, the QOLS as well as a global measure, the SASS/QOL. The QOLS and the SASS/QOL had a significant, moderate, positive correlation (r = .59). The independent variables physical functioning (BI), meaningful f unction (SASS/MF), months since CVA (M/CVA) and social support from friends (PSS/FA) were significantly positively correla ted with quality of life as

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88 measured by both instruments. The BI showed a moderate correlation (r = .52) with the SASS/QOL. Otherwise, the BI had a weak correlation with the QOLS (r=.23), the MMSE (r=.12), M/CVA (r=.24), and PSS/FA (r= .26). Meaningful function wa s significantly correlated with all other variables except m onths since CVA. In particular, meaningful function had strong correlation with quality of lif e as measured by the SASS/QOL (r = .67), a moderate correlation with the QOLS (r = .53), and a weak correlation with the BI (r = .22). There was a significant moderate negative correlation be tween depression and quality of life as measured by both instruments, and meaningful function (r = .29 to .37); where as social support from both friends and family and age were weakly, nega tively correlated with the CESD (r = .07 to .11). Depression was not correlated with months si nce CVA or with cognitive functioning. Age did not significantly correlate with a ny variable other than depression. Question 4 Question 4 explores which independent va riables (meaningful function, functional ability, depression, social support, and length of time since stroke ) or combination of variables predicts the outcome variable, level of quality of lif e. Multiple regression was conducted to explore this relationship. The bivariate re lationships were examined for evidence of multicollinearity. A simultaneous multiple regression analysis of all independent variables was employed to predict quality of life. This included meaningful function (SASS/MF/NOW), functional ability (BI, MMSE), depression (C ESD), social support (PSS/FA, PSS/FR), months since stroke (MCVA), and age. Initially, the measure for qua lity of life used in the model was the QOLS. Data were analyzed using Type III sums of squares. The results of this analysis are presented in Table 4-4. The overall model is st atistically significan t (F=35.35, p= <.0001). This total model

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89 explained 75.32% of the variance in quality of life. The SASS/MF/NOW is positively associated with the QOLS when adjusting for the other va riables in the model. The PSSFR and CESD are negatively associated with Quality Of Life when adjusting for all the other variables in the model. The model was then run again using the global measure of qu ality of life, the SASS/QOL, as the measure of quality of life. This overall model was also statistically significant (F=23.27, p= <.0001). This total model e xplained 75.32% of the va riance in quality of life. However, the relationships of the variab les differed considerabl y. The SASS/MF/NOW was positively associated with the SASS/QOL when adju sting for the other variables in the model. The SASS/MF was also positively associated with the length of time post stroke (MCVA) and depression (CESD) and social s upport (PSS/FA and PSS/FR) were not significantly associated with the SASS/QOL. These data are presented in Table 4-5. Table 4-6 summarizes the findings of the 2 multiple regression models. Depression (CESD) was negatively associated with qual ity of life as measured by the QOLS but no association was found between depression and the SASS/QOL. When quality of life was measured by the QOLS, social support provided by friends (PSS/FR) was ne gatively associated with quality of life and social support provided by family (PSS/ FA) was not associated with quality of life at all. Neither dimension of so cial support (PSS/FA and PSS/FR) was significantly associated with quality of life as measured by the SASS/QOL. None of the variables social support provided by family (PSS/FA), physical functional ability (BI) cognitive functional ability (MMSE), length of time si nce stroke (MCVA), and age was significantly associated with the QOLS. Only the length of time post stroke wa s significantly associated with the SASS/QOL.

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90 Descriptive Interview Data Analysis Question 2 Question 2 explores the concept of quality of life by examining the terms subjects use to describe quality of life. Descriptive data were obtained using the Self-Anchoring Striving Scale for Quality of Life (SASS/QOL). In order to strengthen the measure of quality of life, two different instruments were used to measure qual ity of life. The QOLS provided a domain specific measure of the concept. The SASS/QOL was used to provide a global measure of quality of life. The descriptive data obtained in completing this instrument provides insight into the thought process behind the subjects proce ss of evaluating qua lity of life. The following question was asked: All of us want certain things out of life. Thinking about what really matters in your own life, if you imagine your life in the best possible light, what would your life look like? Permissible probes included: what are yo ur hopes for the future; what would your life have to be like for you to be completely happy; what is missing for you to be happy? Following this, the subject was asked: now taking the other side of the picture, if you imagine your future in the worst possible light, wh at would your life look like then? Permissible probe was: what would make you unhappy? A word analysis was then performed. Question 3 Question 3 explores the concept of meaningf ul function by examining the terms subjects use to describe high and low meaningful function. Descriptive data were obtained using the SelfAnchoring Striving Scale for Mean ingful Function (SASS/MF). The following question was asked: Thinking about what really matters in your own life, what are the five most meaningful or important activitie s in your life? If you imagine your life in the best possible light, what activities would you be doing? Pe rmissible probes were: what

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91 activities would have to be in your life for you to be completely happy: what activities are missing for you to be happy? Following this, the s ubject was asked: now, ta king the other side of the picture, if you imagine your future in the wo rst possible light, what w ould your life look like then? A word analysis was then performed on the data. Text Analysis All Subjects In comparing words in discussing qual ity of life and meaningful functioning, approximately 19% more total words and 6% more unique words were used in discussing quality of life. More than twice as many words were used only once in discussion of quality of life, suggesting that there was a greater diversity of concepts included in the discussion of quality of life than meaningful function. Top Five Terms Life appears in both texts. In the quality of life text it is the most commonly occurring term, occurring 145 times, and is the 18th most commonly occurring term in the meaningful function text, occurring 25 times. Stroke is the 2nd most commonly occurring term in quality of life text and the 3rd most common in the meaningful function text. It is used twice as often in discussing quality of life as compared to th e meaningful function text. Friends is 3rd most common term used in the quality of life text, 13th most common in the m eaningful function text and is used more than twice as of ten in the quality of life text. The word able appears prominently in bot h quality of life and meaningful function texts. In the meaningful functi on text, it is the most commonly used term, occurring 92 times. Able occurs 69 times in the quality of life text, where it is the 4th most commonly occurring term. Other terms appearing in the texts th at refer to being able are independent, independence, dependent, depend, ability, control, and normal.

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92 Independence/dependence occur approximately e qually in quality of life and meaningful function texts, 18 and 19 times respectively. Abi lity occurs four times in the meaningful function text only and control occurs 12 times in the quality of life te xt and 4 times in the meaningful function text. The ove rall indication is that terms re ferencing or related to the concept of being able occur approximately equa lly in both the quality of life text and the meaningful function text (99 and 119 respectively). Relationship Oriented Nouns Table 4-7 shows the terms used in each text which would pertain to relationships and their frequencies. The quality of lif e text contained 38 unique terms for a total of 408 words and the meaningful function text containe d 20 unique terms for a total of 136 words. Eleven terms were common to both texts: friends, family, w ife, kids/children, husband, daughter, grandchildren/kids, God, church, dad /father, and dog. These occurred 311 times in the quality of life text and 126 times in th e meaningful function te xt. God was also referenced in both texts, though only 3 times in the meaningful function text versus 16 references in the quality of life text. In addi tion, the quality of lif e text contained 33 total references to faith, where as the meaningful function text contained no additional refe rences to faith. The quality of life text contained references to additional fam ily members including son, mother, parents, and sister. Neighbors only occurr ed in the quality of life text. Verb Usage Table 4-8 shows the verbs used in each text and their frequencies. Forty-seven unique verbs were used in discussing both meaningful func tion and quality of life. In addition, the total number of these verbs used in each text was fair ly equal, with 901 total verbs being used in the meaningful function text and 912 being used in th e quality of life text. Four of the five most

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93 commonly occurring verbs in each text are the same, though th e frequencies are different. Work occurs with the highest frequency (57 occurrences) in th e meaningful function text. It occurs with the same frequency in the quality of life text, but it ranks as the fourth most commonly occurring verb. Know is the verb that occurs with the highest frequency in the quality of life text, occurring 74 times. It is the 5th most commonly occurring verb in the meaningful function text, occurring 37 times. Want is the second most commonly occurring verb in both texts, occurring 53 times in the mean ingful function text and 63 times in the quality of life text. Care is the 4th most frequently occurring verb in the meaningful function text, occurring 38 times and the 5th most frequently occurring verb in the quality of life text, occurring 41 times. Though similarities are seen in this comparison, there is a general trend toward physical activity in the meaningful function text. Verbs occurring in both texts Among the verbs used in both texts, 24 verbs as sociated with specific activities, totaling 315 words, were used in the meaningful function text. These verbs were drive, walk, talk, read, cook, golf, write, eat, dance, ex ercise, fish, run, travel, sit, laugh, feed, shopping, bowling, cut, tell, drink, hike, mow, and sew. Nine such verbs, totaling 59 words, were used in the qual ity of life text. These included walk, eat, read, sit, golf, drive, travel, and run Here it is clearly seen that the meaningful function text was characterized by verbs denoting specific activities. Though some of these verbs occurred in the quality of life text, the frequency was much lower. Seventeen verbs associated with mental ac tivity or emotions, totaling 253 words, were used in the quality of life text. Twelve of these verbs were also used in the meaningful function text, totaling 163 words. These verbs included ca re, need, hope, love, feel, support,

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94 worry, imagine, guess, miss, enjoy, believe, wish, deal, remembered, and scares. Here, it is seen that the quality of life text is charac terized by verbs associated with mental activities or emotions. T hough these verbs also appeared in the meaningful function text, they occurred approximately half as frequently. Table 4-9 shows the verbs occurring in either meaningful function or quality of life texts. There were 22 unique verbs, totaling 163 words, used in discussing meaningful function that were not used in discussing quality of life. C onversely, 13 unique verbs, totaling 82 words, were used in discussing quality of life but were not us ed in discussing meaningful function. In general, the verbs unique to the meaningf ul function text are associated with specific functions or activities. The verbs unique to the quality of lif e text are less specific and less active or more associated with mental activities or emotions. Comparison of Text Across Age Groups The subject population was broken down into age ranges 40 to 49 years, 50 to 59 years, 60 to 69 years, 70 to 79 years, and 80 to 85 years. The meaningful function word count file and the quality of life word count f ile for each subject was copied and pasted into the appropriate separate file for meaningful function and quality of life by each age range. All unique terms occurring two or fewer times were deleted from each file. The 125 most commonly used English words were also deleted. Occurrences of differe nt word forms for the same word in the word count and the rank adjusted accordingly. Table 4-10 presents the distribution by age group of terms used in discussing meaningful function and quality of life. Table 4-11 presents the percentage for each age group of unique words obtai ned from the total number of words used in discussing meaningful func tion and quality of life.

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95 Meaningful Function Ninety-one percent of the unique terms are f ound in the age range 50 to 79 years of age, representing 94% of the total number of words. This is not surprising as 87% of the study population is comprised of this age range. The la rgest population age group was the 60 to 69 year age group, totaling 27 persons and comprising 39% of the sample population. The text from this age group also contained the largest number of unique and total words used in discussing meaningful function, 165 and 1069 respectively, representing 48% of the total number of unique words and 54% of the total of all words. The most interesting finding is that the term s found in the 40 to 49 years and the 80 to 85 years age groups were not characteristic of t hose found in the remainde r of the study sample. Both age groups had significantly fewer terms af ter deletion of common words. The verbs used by the 40 to 49 year age group were not characteristically those de noting specific activities. In the 40 to 49 year age group 251 terms out of the total of 331 unique words were used two or fewer times so were not considered in the anal ysis. Similarly, in the 80 to 85 year age group 229 terms out of the total of 290 unique words were used two or fewer times. When comparing the percentage of unique terms obtained from the tota l number of words in the text utilized in the analysis, 25% of the terms used by the 40 to 49 year age group were unique terms compared to were combined the 17% used by all subjects (Tab le 14). Thirty-one percent of the terms used by the 80 to 85 year age group were unique. This indi cates that more terms were used but were not repeated as they were in the other age groups. Able remains the most commonly occurring term when discussing meaningful function in all age groups except the group of 80-85 year olds, where it doesnt even appear. Interestingly, though work was the most commonly occurring verb among all subjects when discussing meaningful function, it does not hold that rank when the data are broken down into age groups.

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96 Work is not referenced in the 40 to 49 years of age group, which is unusual since this group is well within working age. The study population had 6 subjects in this group, 5 of which were female and none of which were working follo wing the stroke. Sixty-seven percent of the references to work occur in the 50 to 69 years age range. While want was the second most commonly occurring verb among all subjects when discussing both meaningful function and quality of life, it holds this ra nk only in the 60 to 69 year age group. However, this represents 51% of the occurre nces of the term. Table 4-12 presents a comparison of verb usage when discussing meaningful function among the age groups. Only the 10 most comm only occurring verbs were used in the comparison. Because the 40-49 year and the 80 to 85 year age groups had fewer than 10 verbs, all of the verbs occurring in th ese groups were used. The verbs contained in the all subjects category are fairly evenly distributed across all the age groups with the exception of the 80 to 85 year age group. The 40 to 49 year age group used the fewest number of verbs that were also contained in the all subjects gr oup, but four of the five total ve rbs were contained from that group. In the 80 to 85 year age group, the only verb on the list is help The other two verbs, golf and speak are not unique to this age gr oup, but they do not appear in the top ten most commonly used verbs. Table 4-13 presents a comparison of noun usage when discussing quality of life among the age groups. Again, only the 10 most commonly occu rring nouns were used in the comparison. Because the 40-49 year and the 80 to 85 year age groups had fewer than 10 verbs, all of the verbs occurring in these groups were used. It is interesting to note that the 10 most commonly occurring nouns in the group a ll subjects was fairly evenly divided between nouns denoting people and nouns denoting objects. However, the 10 most common nouns in all age groups

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97 except the 40 to 49 year age group were predomin antly objects. Wheelchair, arm and hand were referenced several times, as was stroke. These nouns are suggestive of activity rather than relationship. Quality of Life Similar to what was found with the meaningful function text analys is, 92% of the unique terms are found in the age range 50 to 79 years of age, representing 95% of the total number of words. The text from 60 to 69 year age group ag ain contained the larges t number of unique and total words used in discussing quality of life, 182 and 1263 respect ively, representing 43% of the total number of unique words and 46 % of the total of all words. Again, 27% of the terms used by the 40 to 49 year age group were unique as compared to the 16% used by all subjects (Table 14). Twentyone percent of the terms used by the 80 to 85 year age group were unique. Life was referenced most frequently in th e analysis by all subjects. When broken down by age groups, life does not app ear in the list of terms for th e 40 to 49 year or 50 to 59 year groups. It is the most frequently occurring in th e 60 to 69 year and 70 to 79 year group and is second most common in the 80 to 85 year group. Table 4-15 presents a comparison of verb usage in discussing quality of life among the age groups. In the 60 to 69 and 70 to 79 year age gro ups, as well as the all subject group, only the 10 most commonly occurring verbs were used in the comparison. Because the other groups had fewer than 10 verbs, all of the verb s occurring in these groups were used. In general, the verbs used by the total group are also used in each age group. As seen in the meaningful function analysis, the 40 to 49 year ol ds did not reference work. The verbs used in the 80 to 85 year old group were not unique to that group but th ey did not reference the verbs most commonly used in the other groups. Of intere st, die was referenced in the 70 to 79 year

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98 age group. Again, the verbs appearing in the quality of life text are more associated with mental activities or emotions and less so with specific ac tivities. A notable exception is the reference to golf in the 80 to 85 age group. Table 4-16 presents a comparison of noun usage in discussing quality of life among the age groups. The nouns among all groups are predomin antly those denoting relationship, such as friends, family, parents, and God. These are very different from the nouns used in discussing meaningful function and are s upportive of the findings in th e analysis of all subjects.

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99 Table 4-1 Means of variables QOLS, SASS/ QOL, SASS/MF, BI, MMSE, CES-D, PSS/FR, PSS/FA, Months Since Stroke, Age Variable Maximum Minimum Mean SD QOLS 972372.16 17.66 SASS/QOL 10 3 7.29 1.97 SASS/MF 10 3 6.5 2.02 BI 1002090.71 17.41 MMSE 301427.1 3.17 CES-D 41 011.74 10.41 PSS/FA 20 013.73 6.09 PSS/FR 20 114.56 5.19 Months since stroke 55 328.67 17.33 Age 804563.67 9.63 n=70

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100 Table 4-2 Frequency distribution for vari ables QOLS, SASS/QOL, SASS/MF, BI, MMSE, PSS/FR, PSS/FA, CES-D, Months Since Stroke, and Age. Variable Number Percent QOLS 20-29 3 4.29 30-39 1 1.43 40-49 5 7.14 50-59 4 5.71 60-69 16 22.86 70-79 10 14.29 80-89 18 25.71 90-99 13 18.57 SASS/QOL 3-4/10 7 10.00 5-6/10 18 25.71 7-8/10 20 28.57 9-10/10 25 35.71 SASS/MF 3-4/10 10 14.29 5-6/10 30 42.86 7-8/10 13 18.57 9-10/10 17 24.29 BI 50 or less 5 7.14 70 3 4.29 75 3 4.29 80 3 4.29 90 5 7.14 95 12 17.14 100 39 55.71 MMSE 0-17 (severe impairment) 1 1.43 18-23 (mild impairment) 4 5.72 24-30 (no impairment) 65 92.86

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101 Table 4-2 Continued Variable Number Percent PSS/FA 1-14 31 44.29 15-20 39 55.71 PSS/FR 1-14 24 34.29 15-20 46 65.71 CES-D 0-15 (not depressed) 51 72.86 16-20 (mildly depressed) 6 8.57 21-30 (moderately depressed) 8 11.43 31-60 (severely depressed) 5 7.14 Months since stroke (M/CVA) 3-12 months 21 30.00 13-24 months 11 15.71 25-36 months 10 14.29 37-48 months 15 21.43 49-60 months 13 18.57 Age 40 49 yrs 6 8.57 50 59 yrs 17 24.29 60 69 yrs 27 38.56 70 79 yrs 17 24.29 80 85 yrs 3 4.29 n=70

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102 Table 4-3 Correlations between variables QOLS SASS/ O L SASS/ MF BI MMSE CESD PSS/ FR PSS/ FA M/ CVA Age bSASS/ QOL *2 0.77 1.000 cSASS/ MF *20.73 *10.82 1.000 dBI *30.48 *20.52 *30.47 1.000 e MMSE 0.174 0.20 #30.23 +30.34 1.000 fCESD *2-0.61 *2-0.60 *2-0.61 *2-0.54 -0.09 1.000 gPSS/ FR +30.33 +30.44 *20.60 0.09 +30.35 +3-0.30 1.000 hPSS/ FA 0.21 #30.24 +30.35 #30.26 0.13 +3-0.33 *20.50 1.000 iM/ CVA +3 0.37 #30.26 0.07 #30.24 -0.15 -0.23 -0.20 #3-0.28 1.000 jAge 0.11 0.29 0.08 0.10 -0.05 #3-0.27 -0.08 0.01 0.03 1.000 a Quality of Life Scale (domain sp ecific measure of quality of life) b Self Achieving Striving Scale (globa l measure of quality of life) c Self Achieving Striving Scale for Meaningful Function (meaningful function) d Barthel Index (physical functional ability) e Mini Mental State Exam (cognitive functional ability) f Center for Diagnostic Studies-Depression (depression) g Perceived Social Support/Friends (social support from friends) h Perceived Social Support/F amily (social support from family) i Months Since CVA (length of time in months since the stroke occurred) j Age in years p = < .0001 + p =. 01 # p = .05 1= strong correlation 2= moderate correlation 3= weak correlation

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103 Table 4-5 Simultaneous multiple regression; SASS/QOL as dependent variable Concept Variable ID t Value p Value Meaningful function SASS/MF 8.11 *<.0001 Cognitive functional ability MMSE 0.86 0.39 Age AGE 1.59 0.12 Months since stroke M/CVA 2.12 *0.04 Physical functional abil ity Barthel Index -0.50 0.62 Depression CESD -1.37 0.18 Social support/family PSS/FA 0.63 0.53 Social support/friends PSS/FR -1.74 0.09 Total R2= .82 *statistically significant Table 4-4 Simultaneous multiple regression; QOLS as dependent variable Concept Variable ID t Value p Value Meaningful function SASS/MF 5.31 *<.0001 Cognitive functional ability MMSE 1.33 0.19 Age AGE -0.82 0.42 Months since stroke M/CVA 1.73 0.09 Physical functional ability BI 0.54 0.59 Depression CESD -6.07 *<.0001 Social support/family PSS/FA 0.54 0.59 Social support/friends PSS/FR -2.59 *0.012 Total R2= .82 *statistically significant

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104 Table 4-6 Summary of associ ations found between qua lity of life and inde pendent variables by measure of quality of life Independent variable Quality of Life Scale (QOLS) Self-Anchoring Striving Scale for Quality of Life (SASS/QOL) Meaningful function (SASS/MF) + + Cognitive functional ability (MMSE) 0 0 Physical functional ability (BI) 0 0 Depression (CESD) 0 Social support from family (PSS/FA 0 0 Social support from friends (PSS/FR) 0 Months since stroke M/CVA + Age + positive significant association when adjus ting for the other variables in the model negative significant association when adjus ting for the other variables in the model 0 no significant association when adjusting for the other variables in the model

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105 TABLE 4-7 Comparison of nouns pertaining to relationship Meaningful function Quality of life Frequency Term Frequency Term 34 friends 76friends 18 husband 58family 18 wife 46wife 15 family 37son 13 kids/children 31kids/children 6 dad/ father 29husband 6 dog 20daughter 5 church 17grandchildren//kids 5 daughter 16God 3 cats 15married 3 Charlie 8mother 3 folks 7parents 3 Frank 7sister 3 God 7church 3 grandchildren 6dad/father 6Lord 5dog 4Jesus 4Mildred 4neighbors 4nurses 3Eva 3Leroy

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106 Table 4-8 Comparison of verb usage between meaningful function and quality of life texts Meaningful function Quality of life Frequency Term Frequency Term 57 work 74know 53 want 63want 38 play 58help 38 care 57work 37 know 41care 36 drive 31happen 35 help 28keep 35 walk 26need 34 keep 25hope 32 try 23love 30 talk 21die 29 read 20change 28 love 20try 18 golf 19feel 17 eat 19own 17 watch 18lost 15 need 18stay 14 enjoy 16support 14 imagine 16worry 14 wish 14imagine 13 own 13learn 13 ride 13play 12 happen 12walk 11 fall 11miss 11 run 11move 11 miss 11watch 10 feel 10enjoy 10 travel 9eat 10 sit 9leave 9 let 9talk 8 started 9tell 7 lost 8read 7 speak 8sit 6 learn 8wish 6 stay 7fall 5 buy 7golf 5 change 6drive 5 hope 6let 5 remember 6stopped 5 spend 6communicate 5 support 6started

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107 Table 4-8 Continued Meaningful function Quality of life Frequency Term FrequencyTerm 5 tell 6travel 4 communicate 3buy 4 leave 3realized 4 worry 3remembered 3 die 3ride 3 move 3run 3 stopped 3speak 3spend

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108 Table 4-9 Verbs occurring in ei ther quality of life or meaningf ul function but not the other Frequency Meaningful function FrequencyQuality of life 19 cook 13guess 18 write 12control 14 dance 9believe 11 exercise 9decided 11 fish 8continue 7 laugh 7deal 6 cope 6grow 6 feed 3fill 6 shopping 3hear 5 bowling 3scares 5 cut 3sell 5 forget 3struggle 4 shows 4 stuck 3 drink 3 hike 3 mow 3 pay 3 pushing 3 raising 3 screwed 3 sewed

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109 Table 4-10 Distribution by ag e of terms used in discussing meaningful function and quality of life l subjects -49 yr old -59 yr old -69 yr old -79 yr old -85 yr old Number of unique terms Meaningful function 346 199016560 12 Quality of life 427 17111182101 16 Total number of words Meaningful function 1991 745191069291 38 Quality of life 2718 647231263592 76 Table 4-11 Percentage of uni que terms obtained from the total number of words used in discussing meaningful function and quali ty of life distributed by age group l subjects -49 yr old -59 yr old -69 yr old -79 yr old -85 yr old Meaningful function 17% 25%17%15%21% 31% Quality of life 16% 27%15%14%17% 21%

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110 Table 4-12 Comparison of verb usage across age groups in discussi ng meaningful function All subjects 40 to 49 year 50 to 59 year 60 to 69 year 70 to 79 year 80 to 85 year Freq Term Freq Term Freq Term Freq Term Freq Term Freq Term 57 work 6 care 15 Walk 27 want 12 care 4 golf 53 want 5 want 15 work 23 work 12 play 4 speak 38 play 4 know 12 know 20 drive 9 read 3 help 38 care 3 drive 12 try 17 play 8 want 37 know 3 talk 11 help 17 walk 8 watch 36 drive 11 wish 16 read 7 love 35 help 10 keep 13 care 7 talk 35 walk 8 drive 13 know 7 work 34 keep 8 want 13 write 6 eat 32 try 6 love 12 help 6 help Table 4-13 Comparison of noun usage in disc ussing meaningful function across age groups All subjects 40 to 49 year 50 to 59 year 60 to 69 year 70 to 79 year 80 to 85year Freq Term Freq Term FreqTerm FreqTerm FreqTerm FreqTerm 44 stroke 5 kids 14 stroke 20 stroke 9 friends 3 chores 34 friends 3 family 8 garden 12 home 6 husband 3 fun 25 life 3 husband 8 wheelch11 friends 5 stroke 3 mower 18 husband 3 vision 7 life 6 wheelch4 bed 18 wife 7 wife 5 arm 4 garden 17 home 5 arm 5 bed 4 hand 17 wheelch 5 house 5 beer 4 house 15 bed 4 bed 5 house 4 movies 15 family 4 family 5 night 3 birds 13 children 4 hand 5 world 3 cats

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111 Table 4-14 Comparison of verb usage across age groups in discussing quality of life All subjects 40 to 49 year 50 to 59 year 60 to 69 year 70 to 79 year 80 to 85 year Freq Term Freq Term FreqTerm FreqTerm FreqTerm Freq Term 74 know 4 change 28 know 21 help 18 know 4 feel 63 want 4 happen 24 want 19 know 15 care 4 golf 58 help 3 care 18 work 17 want 9 help 4 love 51 care 3 know 16 help 14 own 9 want 3 want 38 work 3 want 14 care 12 care 9 work 31 happen 3 worry 7 hope 11 happen 6 died 28 keep 6 stay 10 support6 hope 26 need 5 miss 10 try 6 love 25 hope 5 try 10 work 5 keep 23 love 4 eat 9 hope 5 move Table 4-15 Comparison of noun usage in di scussing quality of lif e across age groups All subjects 40 to 49 year 50 to 59 year 60 to 69 year 70 to 79 year 80 to 85 year Freq Term Freq Term FreqTerm FreqTerm FreqTerm FreqTerm 76 friends 5 kids 23 stroke 58 life 43 life 9 life 58 family 5 stoke 17 family 43 stroke 15 friends 4 Christian 46 wife 4 family 16 friends 33 friends 14 family 37 son 3 star 10 money 22 wife 11 husband 31 kids/child 9 children 21 son 10 stroke 29 husband 9 husband17 family 8 children/ kids 20 daughter 12 home 8 daughter 17 grandch/ kids 10 arm 16 god 7 husband 8 mother 7 money

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112 CHAPTER 5 DISCUSSION Introduction This study was designed to collect data to advance the understandi ng of the concept of quality of life in stroke survi vors by exploring the relationships of functional ability, meaningful function, perceived social support, depression, age, and months since stroke. The study conceptualization was informed by Day and Jankeys (1996) model of the evaluation process of quality of life. The sample cons isted of a convenience sample of 70 stroke survivors who were from 3 months to 5 years post stroke had residu al neurological deficits post-stroke, and were living in the community in th e north central Florida area. This study used a descriptive correlational design. Descriptive analysis fo llowed by correlational and multiple regression analysis were employed. Word content an alysis was performed on interview data. Discussion of Data Analysis Descriptive Analysis Quality of life Descriptive analysis showed that as a group this sample rated quality of life as moderate to high. Fifty-nine percent rated quality of lif e from 70 to 99 on the QOLS (possible score from 16 to 112). Sixty-four percent ra ted quality of life from 7 to 10 on the SASS/QOL (possible score from 1 to 10). There are many reasons why this sample would rate their quality life rather high. These subjects were all living in the community, seventy-five per cent of the subjects living with family members or significant others. Functiona l ability averaged near normal. In addition, approximately 40% of the subjects were 3 or mo re years post-stroke. Researchers have reported 52% to 82% of long term stroke survivors were satisfied with their lives (Astrom, Asplund, Astrom, 1992; Granger, Hamilt on, & Gresham, 1988; Viitanen, Fugl-Meyer, Bernspang, Fugl-

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113 Meyer, 1988). In a similar population of stroke su rvivors, King (1996), using the Quality of Life Index, reported a relatively high quality of life. Functional ability This samples functional ability was near nor mal. Physical functioning, as measured by the BI had a mean of 90.71 (out of a possible 100) but 55.71% of the samp le scored 100 out of a possible 100 and 80% of the sample scored 90 or above on the BI. Cognitive functioning as measured by the MMSE had a mean of 27.1 (out of a possible 30) and 92.86% of the sample scored in the no impairment category. It is not surprising th at the sample as a whole would have a high level of functioning. The recruiting strategy favored reaching mobile subjects, i.e., those who could attend or otherwise utilize community resources such as stroke support groups, senior citizen groups, church, and outpatient clinics. Also, subjects th en had to contact the researcher to initiate participation. All of these f actors would bias the sample to ward a high functioning sample. Meaningful function This subject population scored their level of meaningful f unction on the mid to lower end of the scale. Fifty-seven percent of the sample rated meaningful f unction as six or less. In terms of medical outcomes of stroke recovery, this stroke survivor population has a high level of functioning in terms of being ab le to complete the types of activities addressed in stroke rehabilitation. However, they st ill rated their levels of meaningful function lower than their levels of functional ability. Duncan et al (2001) had a similar finding in their qualita tive study of post-stroke outcomes. They found that stroke survivors who appeared high functioning based on standard assessment scales reported persistent di sability and rated themse lves as being only 50% recovered.

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114 This finding certainly lends support to the concept of meaning function and differentiation of functional ability and meani ngful function being different concepts. Other studies, primarily qualitative studies, have suppor ted this finding. Stroke survivors defined stroke recovery in terms of returning to purposeful activity and did not value specific functions (Doolittle, 1990). Cerebral palsy patients chose de pendence in activities of daily living in order to save time and energy for other more valued activities (Kibele, 1989). A difficulty in this study was the use of the BI to measure functional ability. This instrument has ceiling effect resulting in lack of sensitivity in differentiating among those with high levels of functioning (Kane, 1997; Ke lly-Hayes, 1996; Moinpour, McCorkle, Saunders, 1988; Neal, 1998). The ceiling effect of the BI woul d not interfere with identification of general levels of functioning but would result in difficulty differentiating among those with deficits that dont significantly inte rfere with activities of da ily living. Use of an instru ment more sensitive in highly functioning individuals may make this comparison more meaningful, but it doesnt change the fact that the BI reasonably captures th e functional ability in the areas that are focused on in stroke rehabilitation. Depression Though roughly 73% of the subjects had no depr ession, twenty-seven percent did exhibit depression and 18% were severely depressed. This prevalence of depression among stroke survivors is typical. Kings ( 1996) sample of stroke survivor s also had a 30% prevalence of depression. Stroke literature reports rates of depression of 30% to 35% (American Heart Association, 2006; Williams, 2005). It is also very interesting that the prevalence of depression among the elderly has been reporte d between 17.7% and 30% worldwide. In general, depression was associated with the presence of physical di seases, cognitive impair ment, sleep disorders,

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115 being unmarried, and female gender. This high inci dence of depression in the elderly in general is likely related to the issues of failing health and changing life situations (Brown, McAvay, Raue, Moses, & Bruce, 2003; Cullum, Tucker Todd, & Brayne,2006; Fernandez et al., 2006; Gomez & Gomez, 1993; Kurlowicz, Outlaw, Ra tcliffe, & Evans, 2005; Liu et al., 1997; Papadopoulos et al., 2005). Therefor e, it is not too surprising to find a 27% depression rate in this subject population. Social support Investigators have linked low le vels of social support with lower quality of life and life satisfaction (Gottlieb, Golander, Bar-Tal, & Gottlieb, 2001; Jaracz & Kozubski, 2006; Jaracz & Kozubski, 2003; Kim, Warrnen, Ma dill, & Hadley, 1999; King, 1996; Viitanen et al., 1988). The subjects in this study reported a relatively high level of social s upport, with over half the subjects reporting perceived social support from family a nd friends from 15 to 20, out of a possible score of 20. Given that seventy-five percent of the subj ects lived with family members or significant others, a high level of perceive d social support is not surprising. Correlation/Question 1 Many of the independent variables in the mode l are at least moderately correlated with each other. Independent variables frequen tly have some degree of correlation, or multicollinearity. However, a high degree of mu lticollinearity among the independent variables will negatively affect the multiple regression analysis and can result in a variable appearing that there is no correlation with the de pendent variable, when, in fact, the variable is highly correlated with a number of the independent variables included in the regression model (Newton & Rudestam, 1999). In general, an r > .80 is c onsidered problematic (L icht, 1998). The largest

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116 correlation between independent variables was a correlation of -0.61 between the CES-D and the SASS/MF, which is in acceptable range. Quality of life There was a moderate positive correlation (r= .77, p=<.0001) between the two measures of quality of life. This indicates that the QOL S and the SASS/QOL are not measuring exactly the same concept. The QOLS includes items measuring specific domains of qua lity of life including physical and material well-bei ng, relationships, social/commun ity/civic activities, personal development and fulfillment, and recreation. On the other hand, the SASS/QOL produces an overall or global measure of quality of life. Usi ng a domain-specific instrument, a low score on a domain of little or no importance to an individual may result in lower quality of life rating than the rating obtained on a global rating. The SASS/MF and the SASS/QOL have a st rong positive correlation (r= .82, p=<.0001). This conclusion is supported by the moderate correlation (r=.73, p=<.0001) between the SASS/MF and the QOLS. The indication is that higher levels of meaningful function are associated with higher levels of quality of life. The correlation analysis also showed that the independent variables, physical functional ability, perceived soci al support, and depression were significantly correlated with the de pendent variable, quality of lif e. This would be expected on the basis of Day and Jankeys model of the Evaluative Process of Quality of Life, as these concepts were operationalized from this model. However, cognitive functional ability was not correlated with either quality of life measure. The ability to comprehend, compare and make judgments is considered essential to percep tion of quality of life (Felce & Perry,1996), thus cognition would be expected to be positively corr elated with perception of quality of life. Since

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117 the selection criteria exclude subjects with more than mild cognitive dysfunction, this finding could have been confounded by th e subject selection process and/or the small sample size. Functional ability Physical functional ability was measured by the BI and cognitive functional ability was measured by the MMSE. Physical and cognitive functional ability were positively weakly correlated (r= .34; p=.01), meaning that subject s with higher levels of physical functioning tended to have correspondingly higher levels of cognitive functioning. This finding would not necessarily be expected among stroke survivors in general. However, this was a small sample of stroke survivors who, on average, had a high leve l of both physical and cognitive functioning. In addition, the BI has a ceiling effect in that it is difficult to distinguish among highly functioning individuals with the BI (Kane, 1997; Kelly-H ayes, 1996; Moinpour, McCorkle, Saunders, 1988; Neal, 1998). The ceiling effect inte rferes with accurate measurem ent and interpretation of level of functioning and how it may correlate with other variables. In addition to the positive co rrelation with physical func tioning, cognitive functioning was positively correlated only with meaningful functioning and social support from family, both of which were weak correlations (r=.23 and .34, re spectively). This is an unexpected finding, in that functional ability is con ceptualized as consisting of bot h physical and cognitive function, thus correlation with all the independent va riables in the study would not be unexpected. There were positive correlations between physical functional ability and both measures of quality of life. The BI had a weak positive corr elation with the QOLS (r= .48; p=<.0001) and a moderate correlation with the SASS/QOL (r= .52; p=<.0001). As with the correlation of physical and cognitive functioning, this would not be pa rticularly expected among stroke survivors in general. In previous studies of quality of life, functional ability has been inconsistently

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118 correlated with quality of life. The finding in this study could be because this sample on average had high levels of both physical functioning and quality of life. Meaningful function and both physical f unctional ability (r=.47, p= <.0001) and cognitive functional ability (r=.23, p= .05) were positively correlated. This correlation would not necessarily be the case in the general stroke population, as hi gh level of either physical or cognitive functioning would not necessarily result in the individual being able to pursue those activities important to him/her. Because the sample on average, had a high level of both physical and cognitive functioning, it would be expected that many in the sample would be able to continue or resume valued activities. It can be pointed out that these co rrelations were moderate ones and that the correlation of physical functiona l ability of r= .23 explains approximately 22% of the variability of the depende nt variable, meaningful functi on. Similarly, the correlation of cognitive functional ability of r= .23 explains approximately 0.05% of the variability of meaningful function. In addition, the descriptive data analysis did not support the correlation between meaningful function and physical function. The descriptive data an alysis indicated that 57% of this subject population scor ed their level of meaningful f unction in the mid to lower end of the scale (six or less on the SASS/MF), ev en though the study population had a high level of functioning in terms of being able to complete activities of daily living. Physical functional ability had a weak pos itive correlation (r=.26, p=.05) with social support from family but no signifi cant correlation with social support from friends. Conversely, cognitive functional ability had a weak positiv e correlation (r=.35, p= .01) with social support from friends but not with social support fr om family. This is an unexpected finding. The expectation is that these two variables are interre lated and would vary together. Since this is a

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119 small sample with a relatively high level of physical and cognitive functioning, it may well represent selection error. The ceili ng effect of the BI may have had some unforeseen effect, also. Meaningful function In addition to the positive co rrelation with physical and c ognitive function ing discussed above, meaningful function was also positively co rrelated with perceived social support from both family and friends. Such a relationship would intuitively be expected. It seems logical that such a relationship would exist. However, the re lationships of meaningful function with social support have not been addressed in the literature. Depression As previously discussed, post-st roke depression is very preval ent. Presence of depression can be expected to affect all ar eas of the individuals life, incl uding interest or pleasure in usual activities, difficulty thinking/ concentrating, and impairment in social functioning (Sobel, Lotkowski, & Mandel, 2005; Williams, 2005). Subject ive characteristics of ones life, such as quality of life, meaningful func tioning, and perceived level of soci al support, would be expected to be negatively impacted. Because an aspect of functional ability includes the desire to perform a function, physical functional ability would be a ffected. Also, post-stroke depression often leads to some of the cognitive impairment present following stroke (Murat a, Kimura, & Robinson, 2000). In this study quality of life, meaningf ul function, physical functional ability, and perceived social support were al l significantly, negatively correla ted with depression score. On the CESD, a higher score indicates higher level of depression. Thus, as depression increased, the scores on quality of life, meani ngful function, physical functional ability, and perceived social

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120 support decreased. This is consistent with curren t literature on depression, stroke survivors, and quality of life. Social support Social support has consistently been relate d to quality of life of stroke survivors (Gottlieb, Golander, Bar-Tal, & Gottlieb, 2001; Jaracz & Kozubski, 2006; Jaracz & Kozubski, 2003; Kim, Warrnen, Madill, & Hadley, 1999; King, 1996). In this study, social support was positively correlated with quality of life, meani ngful function, functional ability, and depression. More detailed discussion of the relationshi ps of social support w ith the dependent and independent variables has been presented above. Age Age was correlated (p= .05) only with depr ession. This was a negative correlation, indicating that older age was associated with a higher level of depression (due to the way the CESD scores relate to the diagnos is of depression). This finding is compatible with the increased incidence of depression among the elderly. Months/CVA (stroke) This study found positive correla tions between quality of lif e and functional ability and length of time post-CVA. No significant corr elation was found between length of time post stroke and meaningful function. Some authors have found that st roke survivors who are post-st roke for longer periods of time tend to rate quality of life higher (Astrom, Asplund, Astrom, 1992; Granger, Hamilton, & Gresham, 1988; King, 1996; Viitanen, Fugl-Meyer Bernspang, Fugl-Meyer, 1988). Clarke and Black (2005) described how some stroke survivors were able to find ways to adapt to their functional disabilities and report a high quali ty of life. Conversely, Berthoux, Calmels, &

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121 Gautheron (1999) found that quality of life tended to deteriorate in some domain over time, even when the disability level is stable. In a related topic, there are inconsistent findi ngs in the literature regarding recovery of functional level following stroke. Some improve ment in function would be expected as the stroke survivor recovers from the stroke. Some authors, though, have found that functional level again declines once the stroke surv ivor has completed rehabilitation and settles into life at home. In addition, the onset of other changes associated with increasing age may also result in a decline in functional level (Anderson et al., 2004; Carlsson, Moller, & Bl omstrand, 2003; Granger et al., 1988; Mayo et al., 1999). Multiple Regression/ Question 4 Meaningful function (SASS/MF/NOW) was positiv ely associated with quality of life as measured by either instrument when adjusting for the other variables in the model. A positive association between quality of life and meaningful function provides support to the associations described by Day and Jankey (1996) in their mode of the evaluation proce ss of quality of life. The remainder of these findings are pu zzling. Depression (CESD) was negatively associated with quality of life as measured by the QOLS but no association was found between depression and the SASS/QOL. When quality of life was measured by the QOLS, social support provided by friends (PSS/FR) was ne gatively associated with quality of life and social support provided by family (PSS/FA) was not associated with quality of life at all. Neither dimension of social support (PSS/FA and PSS/ FR) was significantly associat ed with quality of life as measured by the SASS/QOL. None of the variables social support provided by family (PSS/FA), physical functional ability (BI), cognitive functiona l ability (MMSE), length of time since stroke (MCVA), and age was significantly associated with the QOLS. Only the length of time post stroke was significantly asso ciated with the SASS/QOL.

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122 Also, it is consistent with pr evious research to find no signi ficant associations between functioning (Ahlsio et al., 1984; Blixen & Kippes, 1999; Cardol, Elvers, Oostendorp, Brandsma, & deGroot, 1996; Dunnum, 1990; King, 1996; Samsa & Matchar, 2004; Siosteen et al., 1990), length of time since stroke, and age (Bluvol 2003; Fabian, 1990; Ferrans & Powers, 1985; Goodinson & Singleton, 1989; King et al., 1997) and quality of lif e. The negative correlation between the CESD and quality of lif e is also expected (Haacke, A lthaus, Spottke, Siebert, Back, & Dodel, 2005; Jaracz & Kozubski, 2003; Jon sson, Lindgren, Hallstrom, Norrving, & Lindgren, 2005; Kong & Yang, 2006; Robinson-Smith, Johnston, & Allen, 2000). However, a negative association between social suppo rt provided by friends and the fi nding of no association between social support provided by family are not supported in the literatu re. In populations of stroke survivors, level of social support has consistently been positively associated with quality of life (Gottlieb, Golander, Bar-Tal, & Gottlieb, 2001; Jaracz & Kozubski, 2006; Jaracz & Kozubski, 2003; Kim, Warrnen, Madill, & Hadley, 1999; Ki ng, 1996). Because other researchers have found consistent positive associa tions between quality of life a nd social support using similar instruments, this finding is suspect and may be due to selection error. Descriptive Data/Questions 2 and 3 Comparison of terms used in discussing quality of life and meaningful functioning showed that words referable to th e concept of being able held a prominent place in both texts. This supports the findings in other studies that stroke survivors strive to appear as normal, capable adults. The concept of regaining normality by resuming usual roles, returning to work, participating in personal rela tionships, and becoming capable and self-determining has been identified as essential to str oke recovery. (Clarke and Blac k, 2005; Doolittle, 1990; Secrest and Thomas, 1999 ).

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123 Normality can also be conceptualized in te rms of human occupation, a concept used in occupational therapy. Wilcock (1998) has descri bed human occupation as a synthesis of doingbeing-becoming. This would be in terms of functioning and functi onal ability. He then further describes human occupation as essential to the natural biological mechanism for health. Wilcocks doing-being-becoming framework is usef ul in discussing verb usage in this study. Verbs denoting doing, the active portion of occupation, had the grea test representation overall. Though similarities were seen in compar ing the texts, there was a general trend toward physical activity in the meaningful function text. In general, more of the verbs used in discussing meaningful function were verbs associated with doi ng. Though these verbs occurred in the quality of life text as well, the frequency was mu ch lower. Wilcocks framework indicates that in order to maximize health, there must be a balance among doing, being, and becoming. Though there were more doing verbs contained in th e meaningful function te xt, there were twelve verbs used in the meaningful function text, tota ling 163 words that are associated with being. Verbs that refer to becoming ar e notably absent in th e meaningful function text. Thus, this text analysis identifies the pattern that Wilcock (1998) has been previously identified. Human occupation tends to be over-run by the doing po rtion of the triad. Verbs present in the text indicate introspection is occurring, albeit at a much lower fr equency than would be expected for a balanced relationship and there are no verbs present indicating the becoming portion of the triad. The opposite is true for the quality of life text. Only 9 unique verbs associated with doing, totaling 59 words, appearin g in the quality of life text. Se venteen verbs associated with activities denoting being, totaling 25 3 words, were used in the quality of life text. But, there are still very few verbs representing becoming. The paucity of doing verbs in the quality of life

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124 text is expected. The doing-be ing-becoming framework refers to human occupation, which has function as its base. Meaningful function links functi on to quality of life, but quality of life is an over arching concept that include s more concepts than functioni ng, as is shown by the Day and Jankey (1996) model. This pattern of verb usage indicates two conclusions. First, th is population has a high level of functioning but is not committing time a nd resources to being and becoming that would then, perhaps help them find meaningful function. Second, this data analysis provides support for the relationships of function, m eaningful function, and quality of life described by the Day and Jankeys Model of the Evaluation Pr ocess of Quality of Life (1996). The correlation analysis indicated that there was a strong pos itive correlation (r=.82, p=<.0001) between the global measure of quality of life and meaningful function and a moderate correlation r=.73, p=<.0001) between the domain specific measure of quality of life and meaningful function. The total re gression model explained 75% of th e variance in quality of life. Given these findings, it is likely that the concepts of quality of life and meaningful function are very closely related. The statistica l analysis to this poi nt has done little to provide more in depth insight into the concept of mean ingful function, other than to indicate that they are closely related. The analysis of the interview data has provided some insight into the relationships that may exist. The use of Day and Jankeys (1996) model is supported by the pattern of word usage found in the quality of life a nd meaningful function texts. In Day and Jankeys model, meaningful function is seen as a factor that cont ributes to ones perception of quality of life. Quality of life is a broader concept that also includes meaningful function in addition to other concepts and variables. Using this model, di scussion of quality of life would be expected to

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125 include words used in the discussion of meani ngful function in additi on to additional unique words or concepts not found in th e discussion of meaningful functi on. This is exactly the pattern of word usage found in the quality of life and meaningful function texts. The quality of life text contained more words and a greater diversity of concepts than did the meaningful function text. The followi ng patterns of word usage are examples. The words life, stroke, and friends all occur in both texts but occur more frequently in the quality of lif e text. Because these words are not equally distributed in both texts, it is evidence that the two concepts are not identical concep ts but are closely related. Also, because the frequency of these terms is much higher in the quality of life text, it suggests that the concepts represented by these terms may be of more importance to the concept of quality of life. Both texts contained words related to social support, including family members, friends, and faith-based beliefs, though, clearly, these word s figured more prominently in the quality of life text. Also, there were more diverse unique terms and in general the terms occurred more times in the quality of life text than th ey did in the meani ngful function text. A different pattern of word usage is seen when considering verb usage. The total number of verbs used in both texts was similar but the types of verbs and the fr equencies in which the verbs were used were different. In the meani ngful function text a gr eater number of verbs denoting specific activities were us ed whereas in the quality of lif e text a greater number of verbs denoting mental activities or emotions occurred. This pattern indicates that the concepts of quality of life and meaningful function are differe nt from each other and meaningful function is more than just a sub-concept of quality of life. There are, however, areas of extensive overlap between the two concepts.

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126 Limitations and Recommendations This research was designed to advance the understanding of the concept of quality of life in stroke survivors by exploring the relationships of functional ability and meaningful function. As such, this study represents the first attemp t to operationalize and quantitatively apply Day and Jankeys(1996) Model of the Evaluation Process of Quality of Life, which was developed using a grounded theory design. The results of this stud y suggest that the addi tion of the concept of meaningful function does help to further explain the concept of quality of life. In addition, the results of the study do support Da y and Jankeys model. However, this study represents only a partial exploration of this model and th ere are several limitations to this study. Sample related limitations/recommendations First, the sample consisted of a convenience sample of stroke survivors and the degree to which this sample represents the general populati on of stroke survivors can not be ascertained. The sample selection relied on potential subj ects responding to a fl yer and contacting the researcher. This biases the sample toward those s ubjects that are more motivated to join research projects, those that have high le vels of functioning, and those that have relatively low levels of depression, in addition to other selection biases that may not be read ily apparent to the researcher. This was a small homogeneous sa mple. Only a small portion of the model was opertionalized and explored. In order to truly test the model, a much larger sample and a comprehensive study design is needed. Instrument related li mitations/recommendations A specific instrument related problem pertai ned to the Barthel I ndex (BI), which was used to measure functional ability. This instrume nt has been found to ha ve a ceiling effect and this instrument was not able to differentiate among the subjects who were high functioning. The majority of subjects in this study scored very hi gh on the Barthel Index bu t the subjects rated the

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127 level of meaningful function considerably lowe r than the functional ability. The measure for cognitive functioning did not associate with quality of life. Also, in some studies, the BI has been found to underestimate the degree of disability (Lai, Studenski, Duncan, & Perera, 2002). The Stroke Impact Scale may be a good alternative (Duncan et al., 2003; Duncan et al., 2001). This instrument was discussed as a possible instrument to measure quality of life, but it was not felt to be appropriate for that purpose. However, it was developed to assess physical and psychosocial well-being of stroke patients and th eir response to therapeu tic programs. It consists of 64 items in eight domains: strength, hand function, ADL/instrumental ADL (IADL), mobility, communication, emotion, memory, and participation. A question to assess the stroke survivors global perception of percentage of recovery from the stroke is also included. The domains of strength, hand function, mobility, and ADL/IADL can be combined into a single physical function domain score. This instrument could address both physical a nd cognitive functioning, eliminating the need for a separate instrument. A ddition of a measure of pe rception of percentage of recovery from the stroke would be helpful. Data collection by interview is influenced by characteristics of the interviewer, particularly the experien ce of the interviewer in this method of data collection. This researchers experience in data collection by interview is li mited. Improvement in technique can be gauged by the improvement in the amount and quality of descriptive data collect ed as the researcher gained experience. In addition, this study was not designed to be a qual itative study to explore and develop the concept of mean ingful function. The depth and br eadth of interview data were affected by these factors. Concept related limitations/recommendations The concept of meaningful function has been alluded to in the literature but it has not been defined or studied (Cardol et al.,1996; Clark & Black, 2005; Doolittle, 1990; Kibele, 1989).

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128 As previously discussed, the word analysis meth od used here is best used for preliminary analysis of text data. The word analysis iden tifies word patterns a nd concepts of relative importance based on the frequency of word use. However, the context and meaning of the word use is lost in this method of analysis. The word analysis iden tified important concepts and patterns. Additional study is required to define these concepts and to explore their relationships. There needs to be a comprehensive exploration of meaningful function as a concept in its own right in addition to further studyi ng its relationship with functional ability and quality of life. The concept needs to be studied in a variety of populations for comparison. This would be best accomplished using qualitative methodologies to explore the concept inductively. Measurement issues concerning meaningful function also require further exploration once the concept has been defined in order to determine the most efficacious means of operationalizing meaningful function. This woul d most logically follow from the qualitative study of the concept. Implications Research A goal of this study is to advance the understand ing of the concept of quality of life. The complexity of the concept makes research difficu lt. Researchers in general agree on the broad concept of quality of life, but not on the components comprising quality of life or the relationships between the components. By focusi ng on selected aspects of quality of life, it may be possible to identify how particular variable s affect quality of life and identify what, if any, relationships exist. Exploration of the concep ts meaningful function, functional ability, and quality of life and their relationships represents such an attempt. If this one area can be understood, it can be used as a building block from which other aspects of quality of life can be examined. By proceeding in this fashion understa nding of quality of life can be pursued in a

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129 stepwise fashion. Without an understanding of the components and their relationships, there is no way to know how to improve quality of life. In order for quality of life to be a viable outcome variable for measuring results of treatments, the concept must be well devel oped and the relationships of its components understood. Without this understanding, conclusi ons cannot be drawn about the effect of treatments on the quality of life of subjects. Continued study of th e concept of quality of life is indicated. In particular, Day and Jankeys model a ppears very helpful in conceptualizing quality of life and further study a nd operationalization of its components is indicated. Practice At this time targeting interventions to improve quality of life is limited by the limited understanding of quality of life. In spite of this, the promotion of quality of life is now also sited as an essential component of rehabilitation care (Bluvol, 2003; NicholsLarson et al., 2005; Ostir et al., 2005) and quality of life is being used as an indicator of success of rehabilitation. This research has given support to th e role of meaningful function in determining quality of life. Currently, rehabilitation programs tend to follow a predetermined plan em phasizing activities of daily living. If maximizing quality of life is truly the goal of rehabi litation, the goals of treatment must be adjusted to include those activities important to the individua l. This can only be accomplished by including the stroke survivor in the initial goal setti ng. As the concept of meaningful function is studied further, other me ans to improve quality of life by using specific rehabilitation strategies may also be identified. Further, analysis of the interview data indicated the importance of returning to normal/appearing no rmal for the stroke survivors. Perhaps the focus of treatment groups should be more oriented to ward helping the stroke survivor to return to normal activities if at all possible and not towa rd how to adjust to or compensate for the disability per se. The focus of many support groups and rehabilitation programs is to help the

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130 stroke survivor adjust to the disability and to learn alternate ways to participate in community activities. This approach does not appear to be what the stroke survivor wants, and, as one of my subjects indicated, he did not want to be know n as someone who had a stroke but as someone who was normal. Certainly, more res earch is indicated along this line. The verb analysis of the interview data iden tified that the subjects did not discuss topics indicating introspection, learni ng, and growing in re lation to their meaningful function and quality of life. This perhaps is an area wher e intervention may be of benefit now. Perhaps by helping stroke survivors explore the experience of the stroke, the meaning it has had in their lives, and the functioning that is meaningful to them, nurses can assist stroke survivors adapt to and maximize their quality of lif e. This warrants additional study. This research did again point out the prevalence of depression among stroke survivors. It is particularly interesting that even though this sample had rela tively minor residual deficits, the incidence of depression was still close to 30%. Pract itioners must be aware of the high incidence of depression among stroke survivors, even wh en the practitioner identifies relatively minor deficits. The presence of depr ession significantly impacts the st roke survivors response to rehabilitation and ability to resume his/her life.

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131 APPENDIX A INFORMED CONSENT TO PARTICIPATE IN RESEARCH The University of Florida Health Science Center Gainesville, Florida 32610 IRB# _478-2002 ______ Informed Consent to Pa rticipate in Research and Authorization for Collection, Use, and Disclosure of Protected Health Information You are being asked to take part in a research study. This fo rm provides you with information a bout the study and seeks your a uthorization for the collection, use and disclosure of your protected health in formation necessary for the study. The Principal Investigator (t he person in charge of this research) or a representativ e of the Principal Investigator will also describe this study to you and answer all of your qu estions. Your participation is entirely voluntary. Before you decide whether or not to take part read the information below and ask questio ns about anything you do not understand. If you choose not to participate in this study you will not be penalized or lose any benefits that you would otherwise be entitled to. 1. Name of Participant ("Study Subject") ________________________________________________________________________ 2. Title of Research Study Nursing and Stroke Rehabilitation: A Study of th e Relationship of Stroke Survivors Quality of Life, Functional Ability and Meaningful Function.

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132 3. Principal Investigator and Telephone Number(s) Kathy Smith, MSN, ARNP 352-332-5397 4. Source of Funding or Other Material Support University of Florida 5. What is the purpose of this research study? The purpose of this study is to look at the re lationship between the ability to do every day activities, the importance of these activities and quality of life of stroke survivors. You are being asked to take part in this st udy because you are a stroke survivor. A stroke affects a person in many ways. Your ability to do many activit ies may have been affected. This study is being done to explore several aspects of the stroke survivors life, including: a.) how has the str oke affected your ability to do daily activities; b.) how does your ability to do things affect quality of life?; c.) what activ ities are important to you and how has the stroke affected your ability to do these things?; an d d.) how do you define quality of life? 6. What will be done if you ta ke part in this research study? You will be asked several questions in a faceto-face interview. A portion of the interview will be audio taped. Participation in this study will not affect any care you are getting now or in the future. If you have any questions now or at any time during the study, you may contact the Principal Investigator listed in #3 of this form. 7. If you choose to participate in this study, how long will you be expected to participate in the research? The interview will last from 15 to 90 minutes. The interview is done in one visit, unless you ask that it be broken into two sessions. The interview will be held at a time and place you choose. If you ask for the interview to be done in two sessions, the second session will be scheduled at a time and place you choose w ithin a week of the first visit. 8. How many people are expected to participate in this research? 80 people will be recruited to partic ipate in this research study.

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133 9. What are the possible discomforts and risks? There are no expected risks associated with th is research study. You may become tired during the interview or could become upset about discussi ng the effects of the stroke on your life. At any time you may ask to rest or to stop the inte rview and finish at anothe r time or to withdraw from the study. This study may include risks th at are unknown at this time. Participation in more than one research study or project may further incr ease the risks to you. Please inform the Principal Investigator (liste d in #3 of this consent form) or the person reviewing this consent with you before enrolli ng in this or any other research study or project. Throughout the study, the researchers will notif y you of new informa tion that may become available and might affect your d ecision to remain in the study. If you wish to discuss the information above or any discomforts you may experience, you may ask questions now or call the Principal Investigator or contact person liste d on the front page of this form. 10a. What are the possible benefits to you? You may or may not personally benefit from par ticipating in this study. There are no direct benefits to you. You may benef it from the opportunity to discuss the effects of a stroke on your life. 10b. What are the possible benefits to others? The information obtained from this study may help improve the treatment of stroke survivors in the future 11. If you choose to take pa rt in this research study, will it cost you anything? There is no cost to you. Costs for routine medical care procedures th at are not being done only for the study will be charged to you or your insurance. These cost s may not be charged if you are a veteran and you are being treated at the North Florida/Sout h Georgia Veterans Health System (NF/SG VHS).

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134 12. Will you receive compensation for taking part in this research study? You will not receive compensation for your participation in this study. 13. What if you are injure d because of the study? If you experience an injury that is directly cau sed by this study, only professional consultative care that you receive at the University of Fl orida Health Science Ce nter will be provided without charge. However, hospital expenses w ill have to be paid by you or your insurance provider. No other compensation is offered. Please contact the Principal Investigator listed in Item 3 of this form if you experience an inju ry or have any questions about any discomforts that you experience while participating in this study. 14. What other options or treatments are availabl e if you do not want to be in this study? The option to taking part in this study is doing noth ing. If you do not want to take part in this study, tell the Principal Inves tigator and do not sign this Informed Consent Form. 15a. Can you withdraw from this research study? You are free to withdraw your consent and to stop participating in this research study at any time. If you do withdraw your consent, there will be no pena lty, and you will not lose any benefits you are entitled to. If you decide to withdraw your consent to participate in this research study for any reason, you should contact Kathy S mith at (352) 332-5397. If you have any questions regarding your right s as a research subjec t, you may phone the Institutional Review Board (IR B) office at (352) 846-1494. 15b. If you withdraw, can information abou t you still be used and/or collected? If you decide to withdraw, no information alre ady collected about you will be used in the study and no new information will be collected.

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135 15c. Can the Principal Investigator wit hdraw you from this research study? You may be withdrawn from the study without your consent for the following reasons: 1. You do not qualify to be in the study because you do not meet the study requirements. Ask the Principal Investigator if you would like more information about this. 2. Your health changes and you no longer meet the study requirements. 3. The investigator decides that contin uing in the study woul d be harmful to you. 16. If you agree to participate in this research study, the Principal In vestigator will create, collect, and use private informat ion about you and your health. Once this information is collected, how will it be kept secret (confidential) in or der to protect your privacy? Information collected about you and your health (called protecte d health information) will be stored in locked filing cabinets or in computers with security passwords. Only certain people have the legal right to review these research records, and they w ill protect the secrecy (confidentiality) of these reco rds as much as the law allo ws. These people include the researchers for this study, certain University of Florida officials, the hospital or clinic (if any) involved in this research, and the Instituti onal Review Board (IRB; an IRB is a group of people who are responsible for looking after the rights and welfare of pe ople taking part in research). Otherwise your research record s will not be released without your permission unless required by law or a court order. If you participate in this research study, th e researchers will collect use, and share your protected health information with others. Item s 17 to 26 below describe how this information will be collected, used, and shared. 17. If you agree to participate in this researc h study, what protected health information about you may be collected, us ed and shared with others? Your protected health informatio n may be collected, used, and shar ed with others to determine if you can participate in the stud y, and then as part of your participation in the study. This information can be gathered from you or your pa st, current or future health records, from procedures such as physical examinations, x-rays blood or urine tests or from other procedures or tests. This information will be created by receiving study treatments or participating in study procedures, or from your study visits and telephone calls. More specifically, the following information may be collected, used, and shared with others: a. You will be asked questions about your age, sex, length of ti me since having the stroke, existence of other health problems, previ ous and current occupation, residence, living arrangements, socio-economic level, educati onal level, marital status, and ethnic group.

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136 b. You will be asked questions th at measure your ability to remember things, follow directions, maintain attention, and communicate. c. You will be asked questions about your ability to care for yourself. This includes your ability to feed yourself, perform personal car e and bathing, dress yourself, move about in your home and neighborhood. d. You will be asked questions about your satisf action with your ability to function and your life. e. You will be asked questions that measure depression. f. You will be asked questions that measure y our satisfaction with the social support you receive from family and friends. If you agree to be in this resear ch study, it is possible that so me of the information collected might be copied into a "limited data set" to be used for other research purposes. If so, the limited data set may only include information that does not directly identify you. For example, the limited data set cannot include your name, address, telephone number, social security number, or any other photographs, numbers, codes, or so forth that link you to the information in the limited data set. If used, limited data sets have legal agreements to protect your identity and confidentiality and privacy. 18. For what study-related purposes will your protected health information be collected, used, and shared with others? Your protected health informatio n may be collected, used, and shar ed with others to make sure you can participate in the research, through your participation in the research, and to evaluate the results of the research study. More specifi cally, your protected health information may be collected, used, and shared with others fo r the following study-related purpose(s): a. to determine your eligibility to participate in this study b. to explore several aspects of the stroke surv ivors life, including: a.) how has the stroke affected your ability to do daily activities; b. ) how does your ability to do things affect quality of life?; c.) wh at activities are important to you a nd how has the stroke affected your ability to do these things?; and d.) how do you define quality of life? 19. Who will be allowed to coll ect, use, and share your protected health information? Your protected health inform ation may be collected, used, and disclosed to others by: the study Principal Investig ator, Kathy P. Smith ,MSN ARNP and her research committee,

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137 other professionals at the University of Fl orida or Shands Hospital that provide studyrelated treatment or procedures the University of Florida Institutional Review Board 20. Once collected or used, who may your prot ected health information be shared with? Your protected health inform ation may be shared with: United States and foreign governmental agen cies who are responsible for overseeing research, such as the Food and Drug Admi nistration, the Department of Health and Human Services, and the Office of Human Research Protections Government agencies who are responsible for overseeing publ ic health concerns such as the Centers for Disease Control and Fede ral, State and local health departments Malcom Randall VA Medi cal center (Gainesville) 21. If you agree to participate in this rese arch, how long will you r protected health information be used and shared with others? This study will be completed no later than May 1, 2008. Once data collection and analysis is completed the audiotapes will be erased and the key for the numerical codes identifying subjects will be destroyed. The quest ionnaires and audiotape transcripts will be kept for five years after completion of data analysis and will then be destroyed. This will occur no later than May 1, 2013. During this five-y ear period aggregate data may be used in scientific presentations and/or publications. 22. Why are you being asked to allow the collectio n, use and sharing of your protected health information? Under a new Federal Law, researchers cannot coll ect, use, or share with others any of your protected health information for research unless you allow them to by si gning this consent and authorization. 23. Are you required to sign this consent and authorization and allow the researchers to collect, use and share with others your protected health information? No, and your refusal to sign will not affect your treatment, paym ent, enrollment, or eligibility for any benefits outside this research study. However, you cannot participate in this research unless you allow the collection, use and sharing of your protected health information by signing this consent/authorization.

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138 24. Can you review or copy your protected health informatio n that has been collected, used or shared with others under this authorization? You have the right to review and copy your pr otected health informati on. However, you will not be allowed to do so until after the study is finished. 25. Is there a risk that your pr otected health information coul d be given to others beyond your authorization? Yes. There is a risk that information received by authorized persons could be given to others beyond your authorization and not covered by the law. 26. Can you revoke (cancel) your au thorization for collection, use and sharing with others of your protected health information? Yes. You can revoke your authorization at any time before, during, or after your participation in the research. If you revoke, no new inform ation will be collected about you. However, information that was already co llected may still be used and disclosed to others if the researchers have relied on it to complete and pr otect the validity of the research. You can revoke your authorization by giving a written requ est with your signature on it to the Principal Investigator. 27. How will the researcher(s) benefi t from your being in this study? In general, presenting research results helps the ca reer of a scientist. Therefore, the Principal Investigator may benefit if the re sults of this study are presented at scientific meetings or in scientific journals.

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139 28. Signatures As a representative of this study, I have ex plained to the participant the purpose, the procedures, the possible benefits, and the risks of this research study; the alternatives to being in the study; and how the participants protected health information will be collected, used, and shared with others: ____________________ ____________________ ______ _______ ______________ Signature of Person Obtaining Consent and Authorization Date You have been informed about this studys purpo se, procedures, possible benefits, and risks; the alternatives to being in the study; and how your protecte d health information will be collected, used and shared with others. You have received a copy of this Form. You have been given the opportunity to ask questions befo re you sign, and you ha ve been told that you can ask other questions at any time. You voluntarily agree to participate in this st udy. You hereby authorize the collection, use and sharing of your protected health information as described in sec tions 17-26 above. By signing this form, you are not waivi ng any of your legal rights. ____________________ ____________________ ______ _______ ______________ Signature of Person Consenting and Authorizing Date

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140 Consent to be Audio taped and to Different Uses of the Audiotape(s) With your permission, you will be audio taped during this research. Your name or personal information will not be recorded on the audiotape, and confidentiality will be strictly maintained. When these audiotapes are list ened to, however, others may be able to recognize your voice. The Principal Investigator of this study, Kathy Smith, MSN, ARNP, or her successor, will keep the audiotape(s) in a locked cabinet. These audi otapes will be listened to under her direction to students, researchers, doctors, or other professionals and persons. Please sign one of the following statements that indi cates under what co nditions Kathy Smith, MSN, ARNP has your permission to use the videotape. I give my permission to be audio taped solely for this research proj ect under the conditions described. ______________________________Signature ____________________________Date I give my permission to be audio taped for this research project, as described in the Informed Consent Form, and for the purposes of education at the University of Florida Health Science Center ______________________________Signature ____________________________Date I give my permission to be audio taped for this research project, as described in the Informed Consent Form; for the purposes of education at th e University of Florida Health Science Center; and for presentations at scientific meetings outside the University. ______________________________Signature ____________________________Date

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141 APPENDIX B MINI-MENTAL STATE EXAM Orientation Maximum Score Score What is the: .. year ___________ 5 _______ season__________ date_________ day__________ month_________ Tell me the name of your .. 5 _______ State__________ County________ Town__________ Address_________ Apt# or floor________ Registration .. State clearly and slowly a pple, penny, table Ask patient to repeat them. Give 1 point for each correct answer. 3 ________ Keep repeating these names until he can repeat all three, up to 6 trials. Number of trials needed _______ Attention and Calculation .. Serial 7s. Beginning with 100, count backwards 5 ________ by 7s. Stop after 5 answers. (93, 86, 79, 72, 65) Score the total number of correct answers. Spell world backwards. Score the number of letters in correct order. (DLROW) _________ COUNT THE HIGHER OF THE TWO SCORES Recall .. Recall the three words you previously asked 3 _______ him to remember.

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142 Language Naming: a. show the patient a watch 2 ________ (what is this?) b. show the patient a pencil (what is this?) Repetition: repeat the senten ce no ifs, 1 ________ ands, or buts. Three stage command: give the patient a 3 ________ blank piece of paper and say take the paper in your right hand; fold it in half; and put it on the floor. Reading: read and obey the following 1 ________ CLOSE YOUR EYES Writing: write a sentence fo r me 1 ________ (sentence must contain a subject and verb) Copying: copy design 1 ________ TOTAL ________

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143 Instructions for Administration of Mini-Mental State Exam Orientation 1. Ask for the season, day, and date. Then ask specifically for the parts omitted. One point for each correct. 2. Ask in turn Can you tell me the name of your st ate? (town, county, etc.) One point for each correct. Registration Ask the patient if you may test his memory. Then say the names of 3 unrelated objects (apple, penny, table), clearly and slowly, taking about one second for each. After you have said all 3, ask him to repeat them. This first repetition determines his score (0-3) but keep saying them until he can re peat all 3, up to 6 trials. If he does not eventually learn all 3, recall cannot be meaningfully tested. Attention & Calculation 1. Ask the patient to begin with 100 and count backwards by 7. Stop after 5 subtractions (93,86,79,72,65) Each number should be independently compared to the pervious one, so as to no unduly penalize a single error. The score is the total number of correct answers. 2. Ask the patient to spell the word world backwards. The score is the number of letters in correct order. 3. Count the higher of the two scores. Recall Ask the patient if he can recall the 3 words you previous ly asked him to remember. Score one point for each correct (0-3). Language 1. Naming: show the patient a wrist watch and ask him what it is. Repeat for a pencil. Score one point for each correct response (0-2). 2. Repetition: ask the patient to repeat the senten ce after you. Allow only one trial. Score 0 or 1. 3. Three stage command: give the patient a plain blank paper and repeat the command. Score 1 point for each part correctly executed (0). 4. Reading: on a blank piece of paper, print the sentence close your eyes, in letters large enough for the patient to clearly see. Ask him to read it and do what it says Score 1 point only if he actually closes his eyes. 5. Writing: give the patient a blan k piece of paper and ask him to write a sentence for you. Do not dictate a sentence, it is to be written spontaneously. It must contai n a subject and verb and be sensible. Correct grammar and punctuation are not necessary. Scor e one point for a correct sentence. 6. Copying: on a clean piece of paper, draw intersecting pentagons, each side about 1 inch, and ask him to copy it exactly as it is. All 10 angles must be present and 2 mu st intersect to score 1 point. Tremor and rotation are ignored. Score one point for a correct figure. 7. Total score: sum the scores in each section for the total score.

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144 APPENDIX C DEMOGRAPHIC QUESTIONNAIRE 1. ID NUMBER:_________ 2. SEX male female 3. MARITAL STATUS: Single married divorced widowed 4. NUMBER OF CHILDREN: dependent _________ adult__________ 5. WHO LIVES WITH YOU? 6. SPOUSES HEALTH STATUS: N/A A&W significant illness: N Y DX:________ 7. LAST YEAR OF SCHOOL COMPLETED:_______________ 8. OCCUPATION: Present: _________________ Previous: __________________ 9. RESIDENCE TYPE: Single family dwelling apartment other: retirement complex assisted living complex 10. RACE:______________ 11. DATE OF BIRTH:__________ (AGE_____) APPROXIMATE YEARLY INCOME: UNDER $10,000 PER YEAR $81,000 TO $90,000 PER YEAR $11,000 TO $20,000 PER YEAR $91,000 TO $100,000 PER YEAR $21,000 TO $30,000 PER YEAR $101,000 TO $110,000 PER YEAR $31,000 TO $40,000 PER YERA $111,000 TO $120,000 PER YEAR $41,000 TO $50,000 PER YEAR $121,000 TO $130,000 PER YEAR $51,000 TO $60,000 PER YEAR $131,000 TO $140,000 PER YEAR $61,000 TO $70,000 PER YEAR $141,000 TO $150,000 PER YEAR $71,000 TO $80,000 PER YEAR GREATER THAN 151,000 PER YEAR DATE OF STROKE: DEFICITS FOLLOWING STROKE:

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145 APPENDIX D REVIEW OF SYSTEMS VISION Can you see to: Read Yes No Watch TV Yes No Do hobbies Yes No Drive Yes No HEARING Can you hear: The radio/TV Yes No To talk with others Yes No To talk on the phone Yes No CARDIOVASCULAR Do you have Chest pain/angina Yes No Circulation problems/legs Yes No Does it interfere with doing daily activities? Yes No RESPIRATORY Do you have Asthma Yes No Emphysema Yes No Shortness of breath Yes No Do you need to use O2 at night Yes No Does your breathing interfere with doing daily activities? Yes No MUSCULOSKELETAL Do you have Back pain Yes No Arm or leg pain Yes No Does your pain interfere with doing daily activities Yes No NEUROLOGICAL Do you have Seizures Yes No Multiple Sclerosis Yes No Parkinsons Disease Yes No ANY OTHER HEALTH PROBLEMS Yes No

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146 APPENDIX E BARTHEL INDEX 1. Feeding 10=Independentable to feed self a meal from a tray or table when someone puts the food within his reach. Patient must put on an assistive device if this is needed, cut up th e food, use salt and pepper, spread butter, etc. and must accomplish this in a reasonable time. 5=With HelpSome help is necessary (with cutting up food, etc., as listed above). 0= Patient requires more help than described above. 2. Moving from wheelchair to bed and return 15=Independent in all phases of this activity. Patient can safely approach the bed in his wheelchair, lock brakes, lift foot-rests, move safely to bed, lie down, come to a sitting position on the side of the bed, change the position of the wheelchair to transfer back into it safely, and return to the wheelchair. 10=Either some minimal help is needed in some step of this activity or the patient needs to be reminded or supervised for safety of one or more parts of this activity. 5= Patient can come to a sitting position without the help of a second person but need to be lifted out of bed, or if he transfers with a great deal of help. 0=Patient requires more help than described above. 3. Personal toilet (wash face, co mb hair, shave, clean teeth) 5=Patient can wash hands and face, comb hair, clean teeth, and shave. Patient may use any kind of razor but must put in blade or plug in razor without help as well as get it from the drawer or cabinet. Female patients must put on own make-up, if used, but need not braid or style hair. 0=Patient requires more help than described above. 4. Getting on and off toilet (handling clothes, wipe, flush) 10=Patient is able to get on and off toilet, fasten and unfasten clothes, prevent soiling of clothes, and use toilet paper without help. Patient may use a wall bar or other stable object for support if needed. If it is necessary to use a bed pan instead of a toilet, he /she must be able to place it on a chair, empty it, and clean it. 5=Patient needs help because of imbalance or in hand, in clothes, or in using toilet paper. 0= Patient requires more help than described above. 5. Bathing self 5=Patient may use a bath tub, a shower, or take a complete sponge bath. Patient must be able to do all the steps involved in whichever method is employed without another person being present. 0= Patient requires more help than described above. 6. Walking on level surface (or if unable to walk, propel wheelchair) 15=Patient can walk at least 50 yds without help or supervision. Patient may wear braces or prostheses and use crutches, canes, or a walker but not a rolling walker. He/she must be able to lock and unlock braces if used, assume the standing position and s it down, get the necessary mechanical aids into position for use, and di spose of them once sitting. (Putting on and taking of f braces is scored under dressing.) 10=Patient needs help or supervision in any of the above but can walk at least 50 yds with a little help.

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147 6a. Propelling a wheelchair (do not score this item if patient gets a score for walking.) 5=If the patient cannot ambulate but can propel a wheelchair independently. He/she must be able to go around corners, turn around, maneuver the chair to a tabl e, bed, toilet, etc. and must be able to push a chair at least 50 yds. 0= Patient requires more help than described above. 7. Ascend and descend stairs 10=Patient is able to go up and down a flight of st airs safely without help or supervision. Patient may and should use handrails, canes, or crutches when needed and must be able to carry canes or crutches when ascending or descending stairs. 5=Patient needs help with or supervis ion of any one of the above items. 0= Patient requires more help than described above. 8. Dressing (includes tying shoes, fastening fasteners) 10=Patient is able to put on and remove and fasten a ll clothing, and tie shoelaces (unless it is necessary to use adaptations for th is). The activity includes putting and rem oving and fastening corset or braces when these are prescribed. Such special clothing as suspenders, loafer shoes, dresses that open down the front may be used when necessary. 5=Patient needs help in putting on and removing or fastening any clothing. At least half the work must be done by the patient. This must be accomplished within a reasonable time. Women need not be scored on use of a brassiere or girdle unless these are prescribed garments. 0= Patient requires more help than described above. 9. Controlling bowels 10=Patient is able to control bowels and have no accidents. Patient can use a suppository or take an enema when necessary (as for spinal cord injury patients who have had bowel training). 5=Patient needs help in using a suppository or taking an enema or has occasional accidents. 0= Patient requires more help than desc ribed above or has frequent accidents. 10. Controlling bladder 10=Patient is able to control bladder day and night. Spinal cord injury patients who wear an external device and leg bag must put them on independently, clean and empty bag, and stay dry day and night. 5=Patient has occasional accidents or cannot wait for the bed pan or get to th e toilet in time or needs help with an external device. 0= Patient requires more help than desc ribed above or has frequent accidents. TOTAL _________ Mahoney, Fl & Barthel, D. (1965) Functional evaluation: The Barthel Index. Maryland State Medical Journal, (2) 61-65. (Public Domain)

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148 APPENDIX F QUALITY OF LIFE SURVEY Instructions: The rating scales below are de signed to measure the degree to which you are satisfied with several aspects of your life. Fo r each category, please circle the number which describes your present level of satisfaction. A score of 0 means that your current situation is terrible for that category. A score of 7 means that you are delighted with your current situation in that category. CATEGORY RATING TERRIBLE DELIGHTED 1. Material comforts : home, food, modern conveniences, financial security 1 2 3 4 5 6 7 2. Health: being physically fit and vigorous 1 2 3 4 5 6 7 3. Relationships with parents, sibling, and other relatives: communicating, visiting, helping 1 2 3 4 5 6 7 4. Having and rearing children 1 2 3 4 5 6 7 5. Close relationship with spouse or significant other 1 2 3 4 5 6 7 6. Close friends 1 2 3 4 5 6 7 7. Helping and encouraging others, participating in organizations, volunteering 1 2 3 4 5 6 7 8. Participating in political organizations or public affairs 1 2 3 4 5 6 7 9. Learning: attending school, improving knowledge 1 2 3 4 5 6 7 10. Understanding yourself: knowing what life is about 1 2 3 4 5 6 7 11. Work: job or home 1 2 3 4 5 6 7

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149 12.Expressing yourself creatively 1 2 3 4 5 6 7 13. Socializing: meeting other people, doing things 1 2 3 4 5 6 7 14. Reading, music, or watching entertainment 1 2 3 4 5 6 7 15. Participating in active recreation 1 2 3 4 5 6 7 16. Independence, being able to do things for yourself 1 2 3 4 5 6 7 TOTALS:

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150 APPENDIX G CANTRILS SELF-ANCHORING STRI VING SCALEQUALITY OF LIFE 1. Equipment : wooden ladder 18 inches tall with ten numbered rungs (see illustration). 2. Speaking to the patient say: All of us want certain things out of life. Thinking about what really matters in your own life, if you imagine your life in the best possible light, what would your life look like? Take your time answering; such things aren t easy to put into words. Permissible Probes : What are your hopes for the future? What would your life have to be like for you to be completely happy? What is missing for you to be happy? Obligatory Probe : Anything else? 3. Speaking to the patient say: Now, taking the other side of the picture, if you imagine your future in the worst possible light, what would your life look like then? Take your time answering. Permissible Probes : What would make you unhappy? Obligatory Probe : Anything else? 4. Speaking to the patient and pulling out the ladder, say: Here is a ladder. Suppose we say that the top of the ladder (pointing) represents the best possible life for you and the bottom (pointing) repr esents the worst possible life for you. A. Where on the ladder (moving finger rapidly up and down ladder) do you feel you personally stand at the present time? Score:__________ B. Where on the ladder would you say you stood before your stroke? Score:___________

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151 APPENDIX H CANTRILS SELF-ANCHORING STRI VING SCALEMEANINGFUL FUNCTION 1. Equipment : wooden ladder 18 inches tall with ten numbered rungs (see illustration). 2. Speaking to the patient say: Thinking again about what really matters in your own life, what are the five most meaningful or important activities in your life? If you imagine your life in the best possible light, what activities would you be doing? Take your time answering. Obligatory Probe : Anything else? 3. Speaking to the patient say: Now, taking the other side of the picture, if you imagine your future in the worst possible light, what would your life look like then? Take your time answering. 4. Speaking to the patient and pulling out the ladder say: Here is our ladder again. If the top of the ladder (pointing) represents the best possible life for you in terms of your activities and the bottom (pointing) represents the worst possible life for you: A. Where on the ladder (moving finger rapidly up and down ladder) do you feel you personally stand at the present time? Score:_________ B. Where on the ladder would you say you stood before your stroke? Score:__________

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152 APPENDIX I CENTER FOR EPIDEMIOLOGIC STUDIES-DEPRESSION SCALE Instructions: Using the scale below, indicate the number which best describes how often you felt or behaved this way DURING THE PAST WEEK. 0rarely or none of the time (less than 1 day) 1some or a little of the time (1-2 days) 2occaisionally or a moderate amount of time (3-4 days) 3most or all of the time (5-7 days) DURING THE PAST WEEK <1 DAY 1-2 DAYS 3-4 DAYS 5-7 DAYS 1. I was bothered by things that usually dont bother me. 01 2 3 2. I did not feel like eating; my appetite was poor. 01 2 3 3. I felt that I could not shake off the blues even with help from my family or friends. 01 2 3 4. I felt that I was just as good as other people. 32 1 0 5. I had trouble keep ing my mind on what I was doing. 01 2 3 6. I felt depressed. 01 2 3 7. I felt that everything I did was an effort. 01 2 3 8. I felt hopeful about the future. 32 1 0 9. I thought my life had been a failure. 01 2 3 10. I felt fearful. 01 2 3 11. My sleep was restless. 01 2 3 12. I was happy. 32 1 0 13. I talked less than usual. 01 2 3 14. I felt lonely. 01 2 3 15. People were unfriendly. 01 2 3 16. I enjoyed life. 32 1 0 17. I had crying spells. 01 2 3 18. I felt sad. 01 2 3 19. I felt that people disliked me. 01 2 3 20. I could not get going. 01 2 3 TOTALS: SCORE:

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153 APPENDIX J PERCEIVED SOCIAL SUPPORT FROM FAMILY AND FROM FRIENDS Directions : The statement which follow refer to fee lings and experiences which occur to most people at one time or another in their relationshi ps with friends. For each statement there are three possible answers: Yes, No, Dont know. Please circle th e answer you choose for each item. 1. My friends give me the moral support I need. Yes No Dont Know 2. Most other people are closed to their friends than I am. Yes No Dont Know 3. My friends enjoy hearing about what I think Yes No Dont Know 4. Certain friends come to me when they have problems or need advice. Yes No Dont Know 5. I rely on my friends for emotional support Yes No Dont Know 6. If I felt that one or more of my friends were upset with me, Id just keep it to myself. Yes No Dont Know 7. I feel that Im on the fringe in my circle of friends. Yes No Dont Know 8. There is a friend I could go to if I were just feeling down without feeling funny about it later Yes No Dont Know 9. My friends and I are very open about what we think about things. Yes No Dont Know 10. My friends are sensitive to my personal needs Yes No Dont Know 11. My friends come to me for emotional support. Yes No Dont Know 12. My friends are good at helping me solve problems. Yes No Dont Know 13. I have a deep sharing relationship with a number of friends. Yes No Dont Know 14. My friends get good ideas about how to do things or make things from me Yes No Dont Know 15. When I confide in friends, it makes me feel uncomfortable Yes No Dont Know 16. My friends seek me out for companionship Yes No DontKnow 17.I think that my friends feel that Im good at helping them solve problems. Yes No DontKnow 18. I dont have a relationship with a friend that is as intimate as other peoples relationships with friends. Yes No DontKnow 19. Ive recently gotten a good idea about how to do something from a friend Yes No DontKnow 20. I wish my friends were much different. Yes No DontKnow

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154 Directions : The statements which follow refer to fee lings and experiences which occur to most people at one time or another in their relationships with their families For each statement there are three possible answers: Yes, No, Dont Know. Please ci rcle the answer you choose for each item. 1. My family gives me the moral support I need. Yes No DontKnow 2. I get good ideas about how to do things or make things from my family. Yes No DontKnow 3. Most other people are closed to their family than I am. Yes No DontKnow 4. When I confide in the members of my family who are closest to me, I get the idea that it makes them uncomfortable. Yes No DontKnow 5. My family enjoys hearing about what I think Yes No DontKnow 6. Members of my family share many of my interests. Yes No DontKnow 7. Certain members of my family come to me when they have problems or need advice. Yes No DontKnow 8. I rely on my family for emotional support. Yes No DontKnow 9. There is a member of my family I could go to if I were just feeling down, without feeling funny about it later. Yes No DontKnow 10. My family and I are very open about what we think about things. Yes No DontKnow 11. My friends are sensitive to my personal needs Yes No DontKnow 12. Members of my family come to me for emotional support. Yes No DontKnow 13. Members of my family are good at helping me solve my problems. Yes No DontKnow 14. I have a deep sharing relationship with a number of members of my family. Yes No DontKnow 15. Members of my family get good ideas about how to do things or make things from me. Yes No DontKnow 16. When I confide in members of my family, it makes me uncomfortable. Yes No DontKnow 17. Members of my family seek me out for companionship. Yes No DontKnow 18. I think that my family feels that Im good at helping them solve problems. Yes No DontKnow 19. I dont have a relationship with a member of my family that is as close as other peoples relationships with family members. Yes No DontKnow 20. I wish my family were much different Yes No DontKnow

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PAGE 168

BIOGRAPHICAL SKETCH Kathy Pyle Smith was born on July 30, 1956 in Clarksburg, West Virginia, where she was raised through high school. She has two sisters, one older and one younger. She graduated from Washington Irving High School in 1974. She atte nded West Virginia University, where she earned a Bachelor of Science in Nursing in 1978 a nd then earned a Master of Science in Nursing in. 1985. She has been a member of the American Association of Neuroscience Nurses, North Central Florida Advanced Practice Nurses, Sigma Theta Tau Nursing Honorary, and the American Nurses Association. Throughout her professional career Kathy has worked in the area of neuroscience nursing with a special interest in rehabilitation. She has worked as a staff nurse on the neurosurgery floor at West Virginia University Hospital in Morgan town W. V., a Neuroscience Clinical Specialist in a private neurosurge ry practice, and an assistant professor nursing in a baccalaureate program of nursing. In 1988 Kathy left West Virginia to become a Primary Nurse III on the neurology service at the University of Virginia Health Sciences Center in Charlottesville, Virginia. In 1990 Kathy moved to Gainesville, Florida to accept a position as an advanced nurse practitioner working with neuroscience patients, affording Kathy the oppor tunity to resume her studies and to pursue a Ph.D. in Nursing. She has continued working in neuroscience in both private practice and university practi ce settings. Kathy is currently employed in the neuros urgery section of the Malcom Randall VA Medical Center in Gainesville, Florida. Upon completion of her Ph.D. program, she hopes to become actively involved in stroke rehabilitatio n research. After moving to Gainesville, Kathy met and married Gene W. Smith and they now have been married for 10 years. 168


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NURSING AND STROKE REHABILITATION: A STUDY OF THE
RELATIONSHIP OF STROKE SURVIVORS' QUALITY OF LIFE,
FUNCTIONAL ABILITIES, AND MEANINGFUL FUNCTION




By

KATHY P. SMITH


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

2007



























Copyright 2007 by Kathy Smith

























To my mother and in loving memory of my father, both of whom are responsible for instilling in

me the values of knowledge, higher education, and scholarship.



















ACKNOWLEDGMENTS


I thank James Gainer, Jr., M.D., who has encouraged, guided, and supported me

throughout my professional career. Without his support, I would not have been able to complete

this degree. I also thank my mentor, Dr. Mary Frances Borgman Gainer, who introduced me to

the concept of rehabilitation, nurtured my growth, and was instrumental in starting me on the

road to my professional career. She has continued to be a mentor and friend and provided a great

deal of encouragement throughout this process. For his continuous loving encouragement and his

conviction in my ability to complete this degree, I thank my husband, Gene. I thank the chair, Dr.

Stechmiller, and members of my supervisory committee, Dr. Neff, Dr. Lutz, and Dr. Gravlee, for

their mentoring and encouragement. I also wish to thank other faculty in the University Of

Florida College Of Nursing who have guided my study. In particular, I wish to thank Dr. Godbey

for her keen assistance in clarifying my ideas.












TABLE OF CONTENTS




Page



ACKNOWLEDGMENTS .............. ...............4.....


LIST OF TABLES ............. .....___ ...............9....


AB S TRAC T ............._. .......... ..............._ 1 1..


CHAPTER


1 INTRODUCTION ................. ...............13.......... ......


Overview ................. ...............13.................

Quality of Life .............. ...............14....
Functional Ability ................. ...............16.......... ......
Meaningful Function .............. ...............17....
Theoretical Perspective............... ..............1
Statement of Problem ................. ...............18................
Research Problem .............. ... ....... ....... ..........2

Assumptions and Limitations of the Study ................. ...............21...............
Significance to Nursing .............. ...............21....
Definition of Terms .............. ...............23....

Quality of Life ................. ...............23................
Meaningful Function .............. ...............25....
Functional Ability ............... ...............25

Depression ................. ...............26.......... .....
Social Support .............. ...............27....


2 REVIEW OF THE LITERATURE ................ ...............31........... ...


Introducti on ................. ...............3.. 1..............
Stroke ................ ...............3.. 1..............
Inci dence ............... .. ... ......... .... .. ......... ....... ..........3
Cortical Location of the Stroke and Functional Deficits ................. .......................32

Right brain stroke ................. ...............33........... ....
Left brain stroke ............... ...............33....
Brain as a functional whole ................. ...............33........... ...

Summary ................. ...............34.................
Stroke Rehabilitation ................ ...............34..

Rehabilitation and Quality of Life ................. ...............36........... ...
Quality of Life .............. ...............36....












Conceptual Development .............. ...............37....
Ferrans' conceptual model .............. ...............38....
Ferrell's conceptual model .................... .......... .... .. ........3

Day and Jankey's model of the evaluation process of quality of life ................... ...40
Measurement Issues............... ...............41.
SF -36 .............. ...............41....
SIP .............. ...............42....
SIS .............. ...............43....

Q LI .............. .... .... ... .......... ...............4
Measurement of quality of life in this study ................ ............... ..............45
Functional Ability ........._..... ...._... ...............47.....
Disability and Handicap .............. ...............48....
Measurement Issues............... .... ...............4
The Functional Independence Measure ...._.._.._ ......._._. ...._.._ ...........5
Barthel Index .............. .... .............. ........5

Quality of Life and Functional Ability ................. ...............52...............
Meaningful Function .............. ........... ...............5
Subj activity of Functional Ability ................. ......... ...............54.....
Meaningful Function and Handicap .............. ...............54....
Normalcy .............. ...............55....
Valued Activities ................. ...............55.................

Independence and Mastery ................. ...............57................

3 METHODOLOGY .............. ...............59....


Introducti on ................. ...............59.................

Subject Sample .............. ...............60....
Subj ect Selection .................. ...............60......_......
Inclusion/exclusion criteria .............. ...............60....

Demographic characteristics .............. ...............61....
Deficit characteristics ........._..... ...._... ...............61....
Co-existing health problems............... ...............62

Study Design and Procedures .............. ...............62....
Instruments .................... ...............66.
Mini Mental State Exam............... ...............66..
Reliability ................. ...............67.......... .....
Validity ................. ...............67.......... ......
Demographic Questionnaire ................. ...............68.................
Review of Systems .............. ...............68....
Barthel Index .............. ...............68....

Reliability ................. ...............69.......... .....
Validity ................. ...............69.......... ......
Quality of Life Survey ................. ...............70.......... .....
Reliability ................. ...............71.......... .....
V alidity ................ ...............71.......... ......












Cantril's Self-Anchoring Striving Scale ......___ ........_.._ ......._ ...........7
Reliability ........._..._.._ ...............73.._.._._ .....
Validity ........._..._... ......_..._. ... ..._.._ .... ..........7
Center for Epidemiological Studies-Depression Scale............... ...............74.
Reliability ................. ...............74.......... .....
V alidity ............... ... .. .......... .. .. .. ..... .. ...........7
Perceived Social Support From Family and Friends ................. ......... ................75
Reliability ................. ...............76.......... .....
V alidity ................ ...............76.......... ......
Data Analysis............... ...............78


4 RE SULT S .............. ...............85....


Introducti on ................. ...............85.................
Descriptive Statistics .............. ...............86....
Quality of Life ................. ...............86................
Meaningful Function .............. ...............86....
Depression ................ ...............86.................
Social Support .............. ... ...............87...
Months Since CVA and Age ................. ...............87...
Examination of Relationships of the Variables ................. ...............87...............
Q question 1.............. ...............87....
Q question 4................... ... .... ............8
Descriptive Interview Data Analysis ................ ...............90................
Question 2............... ...............90...
Question 3................... ...............90
Text Analysis All Subj ects ................ ...............91........... ...
Top Five Terms .............. ...............91....
Relationship Oriented Nouns .............. ...............92....
V erb U sage .......................... ..............9
Verbs occurring in both texts .............. ...............93....
Comparison of Text Across Age Groups .............. ...............94....
Meaningful Function .............. ...............95....
Quality of Life ................. ...............97................

5 DI SCUS SSION ................. ................. 1......... 12....


Introducti on ................. ........... ................ 112....
Discussion of Data Analysis ................. ...............112...............
Descriptive Analy si s ................ ...............112...............
Quality of life ................. ...............112...............
Functional ability ................. ...............113................
Meaningful function ................. ...............113................
Depression ................. ...............114................
Social support ................. ...............115................












Correlation/Question 1 ............ ........... ...............115...
Quality of life ............ ............ ...............116..
Functional ability ................. ...............117.............
M meaningful function ................. ...............119.............
D expression ............ ............ ...............119...
Social support............... ...............120
A ge .............. ............. .............12
Months/CVA (stroke)............... ...............12
Multiple Regression/ Question 4 ........._._.. ....__. ...............121..
Descriptive Data/Questions 2 and 3 .............. ...............122....
Limitations and Recommendations ........._.__........__. .....__. ..........12

Sample related limitations/recommendations ........._._........__. ........._._....126
Instrument related limitations/recommendations ................. ........................126
Concept related limitations/recommendations ........._. ....... ___ ...............127
Implications ............ _...... ._ ............... 128...
Research .............. ...............128....
Practice ............ ..... .. ...............129...


APPENDIX


A INFORMED CONSENT TO PARTICIPATE IN RESEARCH ................. ............... ....131


B MINI-MENTAL STATE EXAM ................. ...............141...............


C DEMOGRAPHIC QUESTIONNAIRE............... .............14

D REVIEW OF SYS TEM S ................ ...............145..............


E BARTHEL INDEX .............. ...............146....


F QUALITY OF LIFE SURVEY ................. ...............148.......... ....

G CANTRIL' S SELF-ANCHORING STRIVING SCALE--QUALITY OF LIFE............... 150

H CANTRIL'S SELF-ANCHORING STRIVING SCALE-MEANINGFUL FUNCTION. 151


I CENTER FOR EPIDEMIOLOGIC STUDIES-DEPRESSION SCALE ...........................152


J PERCEIVED SOCIAL SUPPORT FROM FAMILY AND FROM FRIENDS ..................1 53


REFERENCE LIST .............. ...............155....


BIOGRAPHICAL SKETCH ................. ...............168......... ......










LIST OF TABLES


TABLE Page

1-1 Study variables and associated instruments................ ..............3

3-1 Selected demographic characteristics of the sample of stroke survivors .............. ..... ........._.82

3-2 Sample's post stroke deficits .............. ...............84....

3-3 Sample' s co-existing health problems ........... _.....___ ...............84.

4-1 Means of variables QOLS, SASS/QOL, SASS/MF, BI, MMSE, CES-D, PSS/FR,
PSS/FA, Months Since Stroke, Age .............. ...............99....

4-2 Frequency distribution for variables QOLS, SASS/QOL, SASS/MF, BI, MMSE,
PSS/FR, PSS/FA, CES-D, Months Since Stroke, and Age. ............. ......................0

4-3 Correlations between variables ........... ......._ ...............102..

4-4 Simultaneous multiple regression; QOLS as dependent variable .............. ...................103

4-5 Simultaneous multiple regression; SASS/QOL as dependent variable ........._..... ..............103

4-6 Summary of associations found between quality of life and independent variables by
measure of quality of life ................. ...............104.......... ...

4-7 Comparison of nouns pertaining to relationship. ................ ........... ........ ...........105

4-8 Comparison of verb usage between meaningful function .....................

and quality of life texts ................ ............ .................. ...................106

4-9 Verbs occurring in either quality of life or meaningful function but not the other.............. 108

4-10 Distribution by age of terms used in discussing meaningful function and quality of life.. 109

4-11 Percentage of unique terms obtained from the total number of words used in
discussing meaningful function and quality of life distributed by age group ..................1 09

4-12 Comparison of verb usage across age groups in discussing meaningful function .............1 10

4-13 Comparison of noun usage in discussing meaningful function across age groups ...........110

4-14 Comparison of verb usage across age groups in discussing quality of life ................... ......11 1

4-15 Comparison of noun usage in discussing quality of life across age groups ................... ...111










LIST OF FIGURES


FIGURE page

1-1 Adaptation of Day and Jankey's model of the evaluation process of quality of
life ............... ...........28...................

1-2 Adaptation of Day and Jankey's model of the evaluation process of quality of
life: selected variables and method of measurement ................ .....................29









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

NURSING AND STROKE REHABILITATION: A STUDY OF THE
RELATIONSHIP OF STROKE SURVIVORS' QUALITY OF LIFE,
FUNCTIONAL ABILITIES, AND MEANINGFUL FUNCTION.


By

Kathy P. Smith

May 2007

Chair: Joyce Stechmiller
Major: Nursing Sciences


Promotion of quality of life is often cited as a goal in the treatment of those with chronic

illnesses and disabilities, including stroke, a leading cause of long term disability. Rehabilitation

of stroke survivors focuses on deficits in physical and cognitive functions. Recovery of function

is expected to equate with improved quality of life. However, clinical research on quality of life

in disabled persons has failed to link patients' perceptions of quality of life with functional

ability.

A descriptive, correlational study was designed with the purpose of advancing the

understanding of the concept of quality of life of stroke survivors. The relationships of quality of

life, meaningful function, functional ability and selected other variables were explored using Day

and Jankey's Model of the Evaluation Process of Quality of Life. Seventy community-dwelling

stroke survivors who were 3 to 60 months post-stroke were recruited from the north-central

Florida area. Data were collected using the Quality of Life Survey (QOLS), the Barthal Index

(BI), the mini-mental status exam (MMSE), the Center for Epidemiologic Studies-Depression

Scale (CES-D), Perceived Social Support From Family and Friends (PSS/FA and PSS/FR), a









demographic questionnaire, Cantril's Self-Anchoring Striving Scale for Meaningful Function

(SASS/MF), and Cantril's Self-Anchoring Striving Scale for Quality of Life (SASS/QOL). Data

were subj ected to correlational and simultaneous multiple regression analysis. Descriptive

interview data were analyzed using a word analysis technique.

Data analysis found a strong relationship between quality of life and meaningful function.

The SASS/MF and the SASS/QOL have a strong positive correlation (r= .82, p=<.0001). This

conclusion is supported by the moderate correlation (r=.73, p=<.0001) between the SASS/MF

and the QOLS. Multiple regression analysis found that the 75.32% of the variance in quality of

life was explained in the model containing meaningful function, functional ability, depression,

social support, months since stroke, and age. Study findings support the concepts of meaningful

function and functional ability being different concepts. Support is also provided for the

relationships of function, meaningful function, and quality of life described by the Day and

Jankey's Model of the Evaluation Process of Quality of Life.









CHAPTER 1
INTTRODUCTION

Overview


Quality of life is a concept that has attracted much attention in the past forty years. In

health care, promoting quality of life is frequently the rationale for treatment decisions and

enhancing quality of life is often cited as a goal of treatment in chronic illnesses and in

rehabilitation (Rapkin & Schwartz, 2004; Post, de Witte, & Schrivers, 1999, van Dijk, 2000).

Promoting quality of life is, in fact, specifically described as a nursing responsibility in the

Standards and Scope of Rehabilitation Nursing Practice (Association of Rehabilitation Nursing,

n. d.), while identifying the components of a good quality of life and measuring those

components have proven to be elusive.

Stroke is a leading cause of long term disability in the United States. Death, either from

the stroke itself or from secondary complications due to the stroke, is occurring less frequently

(American Heart Association, 2006). As technological advances have made it possible to

support and extend life, individuals who would not have survived the stroke in past years now do

survive. Thus, current stroke survivors often have more complex deficits affecting their quality

of life than did former survivors. Rehabilitation of stroke survivors focuses on deficits in

physical and cognitive functions that result from stroke. Treatment goals relate to improving

those functions. Logically, recovery of function should be equated with improved quality of life

(Buck, Jacoby, Massey, & Ford, 2000; Clark & Black, 2005; Haacke, Althaus, Spottke, Siebert,

Back, & Dodel, 2006; Nichols-Larsen, Clark, Zeringue, & Blanton, 2005; Samsa & Matchar,

2004; Secrest & Thomas, 1999). However, in clinical research on quality of life in disabled

persons, functional ability has inconsistently explained patients' perceptions of either recovery or

level of quality of life (Carlsson, Moller, & Blomstrand, 2004; Doolittle, 1990; Lalu, 2003;









Meeburg, 1993; Robinson-Smith, Johnston, & Allen, 2000; Samsa & Matchar, 2004; Secrest &

Thomas, 1999). This may be due, in part to the difficulty in defining the concept of quality of

life.

Quality of Life

There is a general acceptance of the existence and the importance of the concept of

quality of life, and it seems to be intuitively meaningful and understandable to most people

(Burckhardt & Anderson, 2003). However, there is much disagreement about its

conceptualization, as is illustrated in a study of health care professionals that included primary

care providers, occupational therapists, and physical therapists. This study showed wide variation

in the definition of the concept as well as difficulty in selecting an appropriate measurement

instrument (McKevitt, Redfern, La-Placa, & Wolfe, 2003).

Researchers have identified many factors related to quality of life. However, quality of

life has been defined in many ways and researchers have used various measurement instruments

arising from different philosophical frameworks. The use of multiple instruments and the lack of

a consensual definition of the concept make a comparison of the research Eindings about

functional abilities and quality of life difficult, leading to inconsistencies in the interpretation of

what constitutes quality of life (Buck et al., 2000; Farquhar, 1995; Ferrans & Powers, 1985;

Haas, 1999; King, Haberman, Berry, Bush, Butler, Dow, Ferrell, Grant, Gue, Hinds, Kreuer,

Padilla, & Underwood., 1997; Lau & McKenna, 2001; Meeberg, 1993; Post et al., 1999; Salter,

Jutai, Teasell, Foley, Bitensky, & Bayley, 2005; van Dijk, 2000).

There is substantial agreement on some necessary components of quality of life among

authors. Both objective (i.e., income, education, occupation) and subjective indicators (i.e.,

expressed satisfaction with life) are considered important in the measurement of quality of life

(Bluvol, 2003; Fabian, 1990; Ferrans & Powers, 1985; Goodinson & Singleton, 1989). In









addition, researchers in general agree that the concept of quality of life includes (a) comparisons

of historical life circumstances and current events, (b) cognitive weighing of positive and

negative facets of life to determine current quality of life, (c) subj activity, (d) dynamism, and (e)

tendency of the perception of quality of life to occur along a continuum (King et al., 1997).

Researchers have identified many factors that can contribute to quality of life including

health care, physical health and function, marriage, family, friends, stress, standards of living,

leisure, future retirement, peace of mind, personal faith, hope, personal appearance, general

happiness, and general satisfaction (Bluvol, 2003; Fabian, 1990; Ferrans & Powers, 1985;

Goodinson & Singleton, 1989; King et al., 1997). In studies of chronic illnesses researchers have

consistently found associations between perceived quality of life and the factors depression

(Sobel, Lotkowski, & Mandel, 2005; Williams, 2005) and social support (Jaracz & Kozubski,

2006; Jaracz & Kozubski, 2003; Kim, Warrnen, Madill, & Hadley, 1999).

Among stroke survivors, depression has consistently been negatively correlated with

quality of life (Haacke, Althaus, Spottke, Siebert, Back, & Dodel, 2005; Jaracz & Kozubski,

2003; Jonsson, Lindgren, Hallstrom, Norrying, & Lindgren, 2005; Kim, Warrnen, Madill, &

Hadley, 1999; King, 1990; Kong & Yang, 2006; Robinson-Smith, Johnston, & Allen, 2000;

Kim, Warren, Madill, & Hadley, 1999). In addition, depression has been negatively correlated

with quality of life in studies of populations with spinal cord injury (Bach, & McDaniel, 1993;

Siosteen, Lundqvist, Blomstrand, Sullivan, & Sullivan, M. 1990), multiple sclerosis (D'Alisa,

Miscio, Baudo, Simone, Tesio, Mauro, 2006; Khan, McPhail, Brand, Turner-Stokes, Kilpatrick,

2006; Pittion-Vouyovitch, Debouverie, Guillemin, Vandenberghe, Anxionnat, & Vespignani,

2006), Parkinson's disease (McDonald, Holtzheimer, & Byrd, 2006), coronary disease (Gott,

Barnes, Parker, Payne, Seamark, Gariballa, & Small, 2006; Mendes, Czajkowski, Freedland,










Bang, Powell, Wu, Burg, DiLillo, Ironson, Krumholz, Mitchell, Bluumenthal, 2006), and cancer

(Williams & Dale, 2006, Yen, Ko, Yen, Yang, Wu, Juan, Hou, 2006).

In populations of stroke survivors, level of social support has consistently been positively

associated with quality of life (Gottlieb, Golander, Bar-Tal, & Gottlieb, 2001; Jaracz &

Kozubski, 2006; Jaracz & Kozubski, 2003; Kim, Warrnen, Madill, & Hadley, 1999; King, 1996).

This positive association between level of social support and social functioning and quality of

life has also been found in studies of populations with a variety of chronic illnesses, including

spinal cord injury (Bach, & McDaniel, 1993; Siosteen et al., 1990), multiple sclerosis (Freeman,

Langdon, Hobart, & Thompson, 1996), osteoarthritis (Blixen, & Kippes, 1999), rheumatoid

arthritis, systemic lupus erythematosus (Burckhardt, Archenholtz, & Bjelle, 1992; Jeffrey, 1989),

cancer (Downe-Wamboldt, Butler, Coulter, 2006; Lim & Zebrack, 2006; Mellon, Northouse,

Weiss, 2006; Roberts, Lepore, Helgeson, 2006), mental illness (Caron, Lecomte., Stip, &

Renaud, 2005; Hansson, 2006), multiple sclerosis (Schwartz & Frohner, 2005), and burn

survivors (Anzarut, Chen, Shankowsky, & Tredget, 2005).

Functional Ability

Functional ability is indicative of an individual's ability to complete those activities that

people do in the normal course of their lives to meet basic needs, fulfill usual roles, and maintain

their health (Haas, 1999). It is the most frequently used variable for measuring rehabilitation

outcomes. In current theoretical/conceptual models, functional ability is consistently linked to

quality of life (Ferrans, 1996; Ferrell, 1995). However, as discussed below, research findings

have not consistently supported this linkage.


Research about the quality of life of disabled people has not shown the anticipated direct

correlation between the individual's quality of life and functional level (Ahlsio et al., 1984;









Blixen & Kippes, 1999; Cardol, Elvers, Oostendorp, Brandsma, & deGroot, 1996; Dunnum,

1990; King, 1996; Samsa & Matchar, 2004; Siosteen et al., 1990). This phenomenon has also

been described in qualitative studies of individuals with cerebral palsy (Kibele, 1989) and stroke

(Doolittle, 1990; Secrest & Thomas, 1999). In these studies, purposeful or meaningful activity,

rather than functional ability, was significant in determining quality of life. These findings

support the observations of rehabilitation professionals, who have long recognized that

successful physical rehabilitation does not necessarily result in satisfactory adjustment to a

disability or community reintegration (Delaney & Potter, 1993; Farzan, 1991; Samsa & Matchar,

2004; Spencer, J., 1993).

At first glance, it does not seem logical that there have been such inconsistencies in the

correlation between functional ability and quality of life. However, quality of life is an extremely

complex, multi-faceted concept with a strong subjective component. Much of the current stroke

literature provides an etic perspective of the stroke survivor' s life and does not provide insight

into the meaning the individual attaches to having a stroke (Clarke & Black, 2005; Doolittle,

1990; Secrest & Thomas, 1999). Functional ability is also measured from an etic perspective.

The researcher measures what he/she believes is important to function and often does not take

into account how the individual values the behavior being measured. However, results from

qualitative studies suggest that variations in the meaning the individual places on functional

ability may be able to predict variations in stroke survivors' quality of life (Clarke & Black,

2005; Doolittle, 1990; Rapkin & Schwartz, 2004; Secrest & Thomas, 1999).

Meaningful Function

Meaningful function is the subj ective aspect of functional ability. The individual's values,

beliefs, and life circumstances will determine the relative importance of a specific functional

ability (Delaney & Potter, 1993; Farzan, 1991; Rapkin & Schwartz, 2004; World Health










Organization, 1980). Recovery from acquired disabilities is often defined by the affected

individual in terms of a return to activities important to the individual and to a reconnection to

pre-disability concerns and social practices. This definition incorporates the individual's belief

about normalcy, continuity with previous life experiences, capabilities, and consistency with

one's self-identity (Clarke & Black, 2005; Doolittle, 1990). The value an individual places on an

activity or the perceived need to perform an activity affects an individual's performance of an

activity. The relative perceived importance of an activity determines the number of resources an

individual is willing to commit to an activity (Clarke & Black, 2005; Leidy, 1994).

Theoretical Perspective

Quality of life is a multidimensional concept that involves an individual's self-evaluation

of current life circumstances in the context of culture and value systems. It involves a subj ective

sense of well being encompassing physical, psychological, social, and spiritual dimensions.

Using a grounded theory approach, Day and Jankey (1996) have developed a model that

describes quality of life as a subj ective condition reflecting the level of life satisfaction (Figure

1). The individual evaluates life circumstances resulting in a subjective appraisal of life

satisfaction. The evaluation process takes into account the individual's personal attributes, life

circumstances and personal goals/achievements. Personal attributes include genetic disposition,

values, and life experiences. The constituents of each individual's life circumstances are unique,

due to the infinite number of possible factors that can influence life circumstances. This

complexity of quality of life is what makes it difficult to measure (Day and Jankey, 1996).

Statement of Problem

In summary, quality of life is a complex, multidimensional, largely subj ective concept

that encompasses all aspects of one' s life. There are an infinite number of factors affecting one's









life circumstances, and thus, one' s self-appraisal of quality of life. Instruments designed to

measure quality of life attempt to assess many of these factors. Because of the vastness of the

concept of quality of life, it is difficult to determine how a specific factor influences one' s self-

appraisal of quality of life (Buck et al., 2000; Farquhar, 1995; Ferrans & Powers, 1985; Haas,

1999; King et al., 1997; Lau & McKenna, 2001; Meeberg, 1993; Post et al., 1999; Salter, Jutai,

Teasell, Foley, Bitensky, & Bayley, 2005; van Dijk, 2000).


Rehabilitation professionals identify improved quality of life as a goal of rehabilitation

(Bluvol, 2003; Nichols-Larsen et al., 2005; Ostir, Smith, Smith, & Ottenbacher, 2005). These

professionals have long held that quality of life will be improved by maximizing functional

ability.


Stroke is a leading cause of chronic disability, resulting in a wide range of possible

deficits following stroke. The goal of rehabilitation has been to improve the stroke survivor' s

quality of life by maximizing functional ability. There is not a set rehabilitation program or

protocol for addressing the stroke survivor' s disability, so the rehabilitation program is guided by

the stroke survivor' s functional ability, with the most affected functional deficits receiving the

most attention.


However, research has not shown a consistent relationship between functional ability and

quality of life (Ahlsio et al., 1984; Blixen & Kippes, 1999; Cardol, Elvers, Oostendorp,

Brandsma, & deGroot, 1996; Dunnum, 1990; King, 1996; Samsa & Matchar, 2004; Siosteen et

al., 1990). There is evidence that one' s level of meaningful function is important to one' s self-

appraisal of quality of life (Clarke & Black, 2005; Doolittle, 1990; Rapkin & Schwartz, 2004;

Secrest & Thomas, 1999).









There are at least two problems associated with quality of life research. First, though it is

understood that many factors affect one' s quality of life, it is not understood just how these

factors interplay to determine one's quality of life. Perhaps meaningful function is a more

important indicator of quality of life than functional ability; but perhaps functional ability is

related to meaningful function. Second, the instruments that have been developed to measure

quality of life attempt to address all aspects of quality of life, or measure what the researcher

believes is quality of life. "Grand tour" instruments are unable to isolate the effect of a small,

specific factor on one's overall quality of life. Instruments measuring quality of life from the

etic point of view (the researcher' s view) are not sensitive to potential subj ects' view of quality

of life. Because of these two problems with quality of life research, one can not tell if (a)

functional ability really has no impact on one' s self-appraisal of quality of life, (b) there is some

other type of interaction of factors, such as an interaction of meaningful functioning and

functional ability, that does explain the impact of functional ability on quality of life, or (c)

functional ability has not been found to impact quality of life only because current instruments

are not sensitive enough to measure the relationship.

Research Problem

A goal of this study is to advance the understanding of the concept of quality of life,

particularly in relation to stroke survivors' quality of life, functional ability, and level of

meaningful function by exploring the relationships described by Day and Jankey. This proposal

seeks to explore Day and Jankey's model of quality of life by studying the relationships of

selected variables to quality of life (Figure 2). Personal attributes that will be considered are age,

length of time post-stroke, and post-stroke deficit. Life circumstances that will be included are

functional ability, social support and depression. Individual's goals and achievements will be










represented by meaningful function. The questions this study will attempt to address are as

follows:


1. Are there relationships among meaningful function, functional ability, depression,

social support and quality of life, length of time post-stroke and age?

2. What terms do stroke survivors use to describe quality of life?

3. What terms do stroke survivors use to describe meaningful function?

4. To what extent do the variables meaningful functioning, functional ability, depression,

social support, age, and length of time since stroke predict quality of life in stroke survivors?



Assumptions and Limitations of the Study

This study is based on the following assumptions:

1. Quality of life can be measured.

2. Individuals will respond truthfully to questionnaire items and interview questions.

3. The instruments measure the intended variables.

The limitations of this study are:

1. The study will be comprised of a convenience sample of stroke survivors from one

geographical area; therefore, caution must be exerted in generalizing to all stroke

survivors or to stroke survivors of a different geographic area.


Significance to Nursing

Nurses have a pivotal role in the care and rehabilitation of stroke survivors.

Rehabilitation nursing is a specific practice of nursing care that is primarily directed toward

assisting the disabled person to become re-integrated into society to the highest degree possible.

This outcome is achieved using a two-pronged approach: (a) by teaching strategies to maximize









the disabled person's functional abilities and (b) by mobilizing personal and societal resources.

The promotion of quality of life is now also sited as an essential component of rehabilitation care

(Bluvol, 2003; Nichols-Larson et al., 2005; Ostir et al., 2005). This outcome has been translated

into practice by maximizing functional abilities. Based on current research findings, the practice

does not meet the goal. Level of functional abilities has not been associated with level of quality

of life.

Part of the difficulty with doing quality of life research lies in the complexity of the

concept. Researchers in general agree on the broad concept of quality of life, but not on the

components comprising quality of life or the relationships between the components. Without an

understanding of the components of quality of life and their relationships to one another, there is

no way to know how, or if, functional abilities affect quality of life. Without an understanding of

the components and their relationships, there is no way to know how to improve quality of life.

Thus, it is difficult to know how to proceed in rehabilitation.

Part of the difficulty with doing quality of life research lies in the complexity of the

concept. Researchers in general agree on the broad concept of quality of life, but not on the

components comprising quality of life or the relationships between the components. Without an

understanding of the components of quality of life and their relationships to one another, there is

no way to know how, or if, functional abilities affect quality of life. Without an understanding of

the components and their relationships, there is no way to know how to improve quality of life.

Thus, it is difficult to know how to proceed in rehabilitation.

In terms of quality of life, rehabilitation strategies have been based on intuitive thinking

and have not been research based. By focusing on quality of life as it relates to functional ability

and/or meaningful function, an understanding of this phenomenon may be gained. From this









understanding, specific rehabilitation strategies to enhance quality of life may be identified. This

research would then provide a basis for the provision of rehabilitation nursing care, and possibly

in guiding the development of stroke rehabilitation programs and in identifying additional

support systems necessary to maximize the stroke survivor's quality of life.

The purpose of this study is to advance the understanding of the concept of quality of life.

By focusing on selected aspects of quality of life, it may be possible to identify how particular

variables affect one's self-appraisal of quality of life and identify what, if any, relationship exists

between functional ability and quality of life. If this one area can be understood, it can be used

as a building block from which other aspects of quality of life can be examined. Researchers

have been studying the effect of other life circumstances on quality of life. For example, Ferrell

et al. (1991) studied cancer survivors and the effect of cancer related pain on quality of life.

Once many different life circumstances are studied, the research outcomes can be analyzed and

themes and patterns identified. Proceeding in this manner, eventually, the concept of quality of

life, its components, and the relationships of the components will be understood.

Definition of Terms

Table 1 identifies the variables of the study and the instrument(s) used to measure the

variable. For the purposes of this study the following definitions will be used:

Quality of Life

Conceptual definition: Quality of life is a multidimensional concept that involves an

individual's self-evaluation of current life circumstances in comparison with personal

expectations in the context of culture, life experiences, and value systems. It primarily involves a

subjective sense of well-being encompassing physical, psychological, social, and spiritual

dimensions.









Operational definition: Quality of life will be measured using two instruments.

1. Cantril's Self-Anchoring Striving Scale. This scale is useful in measuring continuous

data that are highly subjective by providing a widely applicable and easily adaptable technique

(Cantrril, 1965). In this case, each subject will be asked to describe the best possible life on one

extreme and the worst possible life on the other extreme. This description takes into account the

individual's own assumptions, perceptions, goals, and values and defines the anchoring points on

the perceived quality of life continuum. Showing the individual a ladder, each subj ect will be

asked to indicate where on the ladder he/she falls today, with the top being the best life as the

individual defined it and the bottom the worst life as defined by that individual. Each subj ect

will then be asked to indicate where on the ladder he/she fell prior to the stroke. This scale has

been successfully used across cultures and with literate and illiterate respondents (Bernard,

1995).

2. In addition, quality of life will be measured using The Quality of Life Survey (QOLS),

a 16 item Likert-type rating scale that measures satisfaction in six domains of quality of life:

physical and material well-being; relations with others; social, community, and civic activities;

personal development and fulfillment, and recreation; and independence. The QOLS has been

used with a variety of populations including healthy adults, as well as adults with various chronic

illnesses (Burckhardt & Anderson, 2003; Burckhardt, Anderson, Archenholtz, & Hagg 2003;

Burckhardt & Jones, 2005; Burchhardt, Woods, Schultz, and Ziebarth, 1993, 1989; Flanagan,

1978, 1982; Liedberg, Burckhardt, & Henriksson, 2005). Because of the possibility of reading

deficits with stroke survivors, the scale will be administered using an interview format. The

QOLS is being used in this study to provide a domain-specific measurement of quality of life.









Meaningful Function

Conceptual definition: Meaningful function is indicative of the individual's ability to

perform activities that are important to the individual and are often indicative of the stroke

survivor' s pre-stroke interests and abilities.


Operational definition: Meaningful function will also be assessed using Cantril's Self-

Anchoring Striving Scale. Each subject will be asked to describe the five most

important/meaningful activities for him/her. Showing the individual a ladder, each subj ect will

be asked to indicate where on the ladder he/she falls today in terms of the level of satisfaction

experienced with being able to participate in those activities. The top of the ladder represents

being completely satisfied with level of participation in the activities and the bottom represents

complete dissatisfaction. Each subj ect will then be asked to indicate where on the ladder he/she

fell prior to the stroke.


Functional Ability

Conceptual definition: Functional ability is a multidimensional concept that encompasses

the entire domain of functioning. It is indicative of an individual's ability to complete those

activities that people do in the normal course of their lives to meet basic needs, fulfill usual roles,

and maintain their health (Haas, 1999). Functional ability necessarily includes physical

functioning, cognitive functioning, and communication.










Operational definition: Functional ability will be assessed using two standard

instruments .


1. Physical functional ability will be measured using the Barthel Index (BI).

The BI was selected for use in this study because it has been widely used to measure functional

ability of a wide range of populations, including stroke survivors and has had extensive

reliability and validity testing (Neal, 1998). It is a ten item weighted scale measuring level of

independence in the self-care activities of feeding, grooming, bathing, dressing, toileting,

bowel/bladder continence, walking, climbing stairs, and chair/bed transfers (Kane, 1997;

Moinpour, McCorkle, Saunders, 1988; Neal, 1998). The instrument will be completed by

obtaining the self-report of the subj ect using an interview format.

2. Cognitive functioning will be measured using the Mini-Mental State Exam (MMSE),

which assesses orientation and higher cortical functioning, including communication. This

instrument is also used as a screening tool for orientation and ability to communicate verbally.

The MMSE is an 11 item interview administered tool (Tombaugh. & McIntyre, 1992).

Depression

Conceptual definition: Depression is a biologically based mental disorder marked by

altered mood in addition to diminished interest or pleasure in most or all activities, and often

interfering with functioning or participation in daily activities.


Operational definition: Depression will be measured using the Center for Epidemiologic

Studies-Depression Scale (CES-D). The CES-D measures the presence and severity of symptoms

of depression over the past seven days, focusing primarily on cognitive and affective symptoms

(Shinar, Gross, Price, Banko, Boldue, & Robinson, 1986). In this study, the CES-D will be

completed using an interview format.









Social Support

Conceptual definition: Social support is the physical and emotional support provided by

one' s network of family, friends, colleagues, and acquaintances.


Operational definition: Social support will be measured using the Perceived Social Support From

Family (PSS-FA) and Friends (PSS-FR). This scale was designed to measure the extent to which

an individual perceives that his/her needs for support, information, and feedback are fulfilled by

friends and family (Procidano & Heller (1983). In this study, the instrument will be administered

using an interview format.


















LIFE


GOALS AND
ACHIEVEMENTS


PERSONAL
ATTRIBUTES


Figure 1-1 Adaptation of Day and Jankey's model of the evaluation process of quality of life























































Figure 1-2 Adaptation of Day and Jankey's model of the evaluation process of quality of life:
selected variables and method of measurement










29












Table 1-1 Study variables and associated instruments


Variable
Quality of Life

Meaningful Function

Functional Ability
Depression

Social Support

Personal attributes


Instrument
Quality of Life Scale (QOLS); Cantril's Self-Anchoring
Striving Scale/Quality of Life (SASS/QOL)
Cantril's Self-Anchoring Striving Scale/Meaningful
Function (SASS/MF)
Barthel Index (BI); Mini-Mental State Exam (MMSE)
Center for Epidemiologic Studies-Depression Scale
(CES-D)
Perceived Social Support From Family (PSS-FA) and
Friends (PSS-FR)
Self-reported age, gender, race, length of time post-stroke
(reported in months), and post-stroke deficit.












CHAPTER 2
REVIEW OF THE LITERATURE

Introduction


This literature review covers six main areas: (a) stroke, (b) stroke rehabilitation, (c)

quality of life, d) functional abilities, (e) quality of life and functional ability, and (f) meaningful

function. The discussion on stroke includes discussion of the incidence of stroke and an

overview of stroke and resulting deficits. The goals of stroke rehabilitation and characteristics of

stroke rehabilitation programs are discussed. The discussion of quality of life includes the

definition of quality of life, its conceptual development and selected conceptual models, and

measurement issues and selected quality of life instruments. The discussion of functional ability

includes a discussion of the concept in addition to discussion of disability vs. handicap and a

discussion of measurement issues. The relationship of the concepts quality of life and functional

ability are then discussed, followed by a discussion of the concept of meaningful function.

Stroke

In this section stroke incidence and epidemiology will be discussed. Pathophysiology of

stroke and the common deficits resulting from stroke will be described.

A stroke may be a slow or rapidly developing condition resulting from a disruption of

cerebral circulation. As a result of this problem, signs of either focal or global disturbance of

brain function occur. A stroke's most outstanding feature is the sudden onset of functional

defieit(s). The deficit can range from the loss of a single function (such as the loss of the use of

an extremity or the loss of the ability to talk) to a complete loss of all brain functions, resulting in

a coma or death (Bader & Littlej ohns, 2004).









Incidence

Stroke is the third leading cause of death in the United States, ranking behind diseases of

the heart and all forms of cancer. Strokes are also the leading cause of long term disability in the

United States. Approximately 700,000 people experience a new or recurrent stroke each year.

From 1988 to 1993 the death rate from stroke declined 15.1 percent. This trend continued from

1993 to 2003 with a decline of 18.5 percent in the stroke death rate. Currently, there are

approximately 4.5 million stroke survivors in the United States and roughly 40% of them have

some deficits) (American Heart Association, 2006; Delaney & Potter, 1993; Mayo, 1993). In a

study of a population of ischemic stroke survivors 65 years of age and older, 50 percent were

hemiparetic. Twenty-six percent were dependent in activities of daily living. Twenty-six percent

were living in a nursing facility (American Heart Association, 2006). In 2006, the estimated

direct and indirect cost for stroke care is $57.9 billion (American Heart Association, 2006).

Several health risk factors raise the incidence, mortality, and morbidity rates of stroke.

These include age, hypertension, cardiac disease, diabetes mellitus, hyperlipidemia, and previous

stroke. Ethnicity also affects risk. Stroke rates are higher among Blacks, Hispanics, and Native

American Indians. Other factors, such as the socio-political climate of the current health care

delivery system, may affect the patient' s access to acute medical care and/or the access to

inpatient versus outpatient rehabilitation programs, thus effecting mortality and morbidity of

stroke survivors (American Heart Association, 2006; Mayo, 1993).

Cortical Location of the Stroke and Functional Deficits

The type and extent of the functional deficits) that occurs in a stroke patient depends

upon the area of the brain affected by the stroke itself. Several functional areas of the cerebral

cortex are well identified in the literature. A stroke primarily affecting the motor area will result

in motor deficits, the extent of which depends on which portion of the motor area is affected. It









is also possible to have a stroke affecting only the sensory area, which is concerned with the

reception and interpretation of general sensory data, vision, and hearing. Association areas are

also often affected by stroke. These areas are related to higher mental processes such as the

synthesis of complex memory patterns that form the basis of abstract thought. Strokes often

affect both sensory and motor areas as well as the association areas (Bader & Littlej ohns, 2004).

Strokes often affect only one hemisphere of the brain. Because of this, the resulting

characteristic deficit pattern is often referred to as either a right brain or a left brain stroke.

Right brain stroke

The right hemisphere is dominant for visiospatial orientation, constructional praxis, and

judgment in about 90% of the population. In an individual with a right brain stroke, there is a

strong relationship between visual, spatial, perceptual, and motor dysfunction and the

individual's ability to perform activities of daily living (Bader & Littlejohns, 2004; Delaney &

Potter, 1993). The patient with a right brain stroke usually exhibits motor and somatosensory

deficits of the left side of the body (i.e., paralysis or paresis). Often there is a compounding

problem of neglect of denial of the left side of the body in a patient with a right brain stroke.

Left brain stroke

Language control is located in the left hemisphere of 96.9% of the population. Thus, a

patient with a left brain stroke often exhibits problems with expressive or receptive

communication. The person may also exhibit a paralysis or paresis of the right upper and/or

lower extremity (Bader & Littlejohns, 2004; Delaney & Potter, 1993).

Brain as a functional whole

Although primary parts of the brain may be affected as described, it is important to

remember that the brain functions as a coordinated whole organ. In other words, all areas of the

brain are interconnected in such a way that damage to brain tissue in one area does not result










only in a loss of function of that specific area. Rather, the entire brain may suffer from a lack or

loss of input from that area. As a result, activities (such as balance, coordination, and thought

processes) requiring integrated functioning of both hemispheres may be affected (Bader &

Littlejohns, 2004; Doolittle, 1988). In a qualitative study using grounded theory method,

Carlsson, Moller, & Blomstrand (2004) described an astheno-emotional syndrome with

associated mental fatigability as affecting performance of activities and independence.

Summary

In summary, a stroke is not an easy entity to define. The resulting neurological deficits

and functional deficits vary widely among the stroke population.

The deficits) can range from the loss of a single function such as the loss of the use of

an extremity or the loss of the ability to express oneself to a complete loss of all higher

cerebral functions usually associated with coma or death. The cause of all strokes is an

interruption of the blood flow the brain. The result of this disruption varies widely and

it is not possible to generalize from one individual to another individual as to the

functional deficits that a stroke survivor may experience.

Stroke Rehabilitation

This section includes a brief discussion of rehabilitation philosophy and rehabilitation

methods utilized for stroke rehabilitation. The relationship of stroke rehabilitation to quality of

life of stroke survivors is also discussed.

Stroke rehabilitation is the process of helping a stroke survivor move from a state of

dependence to a state of independence in relationship to his/her activities of daily living. The

primary goal of stroke rehabilitation is to maximize the stroke survivor' s functional abilities.

The areas emphasized are mobility skills such as ambulation and transferring from one surface or

position to another (i.e. from a wheelchair to the car seat or from sitting to standing), dressing,









bowel and bladder control, eating, hygiene (Granger, 1998; Mayo, 1993; Teasell& Kalra, 2004).

Research continues to identify the most efficacious treatment modalities and program structure

(Dombovy, 2004; Teasell & Kalra, 2004). There are many different types of stroke programs due

to different underlying philosophies guiding the rehabilitation (Dettmers, Teske, Hamzei,

Uswatte, Taub, & Weiller, 2005; Kalra, Evans, Perez, Knapp, Swift, & Donaldson, 2005;

Langhammer& Stanghelle, 2003; Lincoln, Walker, Dixon, Knights, 2004; O'Connor, Cassidy, &

Delargy, 2005; Robinson-Smith & Pizzi, 2003; Studenski, Duncan, Perera, Reker, Lai, &

Richards, 2005).

Whatever type of program is used, rehabilitation of the stroke patient requires an

individualized, multi-professional, and technical program (Aichner, Adelwohrer, & Haring,

2002; Management of Stroke Rehabilitation Care, 2002; Spencer, W., 1993). Most frequently,

stroke rehabilitation is conducted using a team approach. The rehabilitation team typically

consists of professionals in physiatry, physical therapy, occupational therapy, speech therapy (if

needed), nursing, and social work. In order to focus the diverse specialists on the specific needs

of stroke patients and to provide consistent behavioral intervention, inpatient stroke rehabilitation

is often provided on a stroke unit where all the patients in that particular setting are stroke

patients. Following a stroke unit concept, the members of the rehabilitation team are all

specialists in providing the rehabilitation care required by stroke patients.


Traditionally, in the United States, independence in functioning has been emphasized in

most rehabilitation programs. This reflects the American values of self-reliance and

individualism. In contrast, rehabilitation programs in the United Kingdom place the emphasis on

the individual's adaptation to the deficit, completion of the necessary environmental changes to

foster adaptation, and mobilization of community support services to assist the individual in









meeting basic care needs. This is more in keeping with the sense of collectivism in Great Britain

(Strasser, 1992). Thus, the culture, traditions, values, life styles, and social system of each

individual must be understood for effective and efficient interventions to occur (Shah, Cooper, &

Maas, 1992). However, it is interesting that studies of stroke survivors in different countries

identified similar deficits, concerns, and post-stroke experiences (Bendz, 2003; Carlsson et al.,

2004; Kirkevold, 2002; Martin, Dellatolas, Viguier, Willadino-Braga, & Deloche, 2002;

O'Connell, Hanna, Penney, Pearce, Owen, & Warelow, 2001)

Rehabilitation and Quality of Life

Though the primary focus of rehabilitation remains that of restoring, improving, and

maintaining function in every day living, in the past decade the view that rehabilitation enhances

the quality of life of people with disabilities has become prevalent. Rehabilitation professionals

equate improved functional abilities with improved quality of life. However, little work has been

done in the field of rehabilitation to develop definitions and conceptualizations of the

relationship between quality of life and functional abilities (Day & Jankey, 1996; Granger, 1998;

Secrest & Thomas, 1999; van Dijk, 2000).

Quality of Life

This section on quality of life includes a discussion of the concept of quality of life and its

development Selected models of quality of life are discussed. Day and Jankey's model and its

role in this study is described. Measurement issues encountered in researching quality of life are

explored. Selected instruments, as well as the rationale for selecting the instruments used in this

study, are discussed.









Definition of the Concept

Even though there is a general acceptance of the existence and importance

of the concept of quality of life, there continue to be multiple interpretations and

measurements of quality of life. In 1985 Ferrans and Powers identified this short coming and

described how this problem has lead to inconsistencies in the interpretation of what actually

constitutes "quality of life". Eight years later, Meeberg (1993) noted that the concept remained

ambiguous, and that no definition had been agreed upon, making the concept of quality of life

difficult to measure and empiric research difficult to perform. Burckhardt and Anderson (2003)

note that the definition of quality of life continues to evolve.

Part of the reason for the numerous interpretations of quality of life is that the concept of

quality of life is used in many diverse disciplines such as advertising, health care, economics and

philosophy. Each discipline defines and applies the concept within its perspective (Farquhar,

1995). Even within nursing, the diverse philosophies and goals of care among nursing

professionals make development of a consensual definition difficult. Those nurses primarily

concerned with the impact of illness on physical functioning tend to define quality of life

differently from those who seek to understand the lived experience of an illness in relation to

overall happiness and satisfaction with life (Mast, 1995).

Conceptual Development

Politicians penned the term "quality of life" in the 1960s. U.S. President Linden Johnson

has been quoted as using the term in a speech in 1964. Numerous indicators of quality of life

have since been identified: health care access, physical health and functioning, marriage, family,

friends, stress, standards of living, occupation, education, leisure, peace of mind, personal faith,

personal appearance, general happiness, and general satisfaction. In addition, variables specific

to the individual also have been found to affect quality of life: coping styles, social and









interpersonal networks, existence of depression, personality characteristics such as self esteem,

locus of control, and optimism (Day & Jankey, 1996; Fabian, 1990; Ferrans & Powers, 1985;

Goodinson & Singleton, 1989). Early work by Campbell, Converse, and Rodgers (1976) and

Flanagan (1978) identified five broad domains of quality of life: (a) physical and material well-

being, (b) relations with other people, (c) participation in social, community, and civic activities,

(d) personal development and fulfillment, and (e) recreation. Felce and Perry (1996) developed a

similar model of quality of life by synthesizing the conceptualizations developed in the

disciplines of social welfare, rehabilitation, and mental health. They further hypothesized that

quality of life is determined by (a) the obj ective assessment of life conditions in each domain, (b)

the subj ective evaluation of personal satisfaction in each domain, and (c) the weight each person

places on the subj ective and obj ective assessments of the domains based on personal values.

As interest in the concept grew and research continued, researchers redefined quality of

life from their own perspectives, reflecting their own priorities and interests. The resulting body

of literature is disorganized and it is difficult to determine if the studies are describing the same

concept (Day & Jankey, 1996).

Several researchers have taken the position that the conceptual framework for quality of

life should be developed using a qualitative approach, allowing the concept to be defined and

developed by the respondents. Ferrans (1996) conceptual model, Ferrell's (1995) conceptual

model, and Day and Jankey's (1996) conceptual model were each developed using grounded

theory method with different populations of individuals.

Ferrans' conceptual model

Ferrans began researching the concept of quality of life in 1982 with the goal of

developing a measurement tool. Philosophically the resulting model stresses an emic point of

view--quality of life depends on the unique experience of each person and only the individual









can properly judge his quality of life. Initially, factors affecting quality of life were identified

using an inductive qualitative research approach beginning with hemodialysis patients and then

expanding to several other patient populations and to the general population. Then, using factor

analysis with a quantitative study design, four interrelated domains were identified: (a) health

and functioning, (b) psychological and spiritual functioning, (c) social and economic factors, and

(d) family. Quality of life is defined as a person' s sense of well-being that stems from

satisfaction or dissatisfaction with important areas of life; it is determined by the individual's

subj ective appraisal of satisfaction with life in each of the domains, as well as the relative

importance of each domain to the individual. The Ferrans and Powers Quality of Life Index

(QLI) was developed from this framework. The QLI measures subjective satisfaction and

relative importance of indicators of quality of life in each domain (Ferrans, 1996; Ferrans &

Powers, 1985).

Ferrell's conceptual model

Ferrell (1995, 1991) has developed a similar conceptual framework during her study of

quality of life and cancer survivors. The framework includes four interrelated domains: (a)

physical well-being and symptoms, (b) psychological well-being, (c) social well-being, and (d)

spiritual well-being. Quality of life is determined by the interaction of obj ective life

circumstances with the indicators of quality of life in each domain. Life circumstances will often

impact various aspects of each domain and the meaning will be given to the life circumstance

through the interaction of the four domains.

Even though authors do not agree on a definition of quality of life or a way to

operationalize the concept, there appears to be considerable agreement on the domains that

comprise it. The conceptual frameworks of Campbell, Converse, and Rodgers, Felce and Perry,

Ferrans, and Ferrell each contain similar domains in spite of the fact that the domains were









identified using different methods and populations. However, these conceptual frameworks do

not describe in any detail how the individual arrives at his/her assessment of quality of life.

Day and Jankey's model of the evaluation process of quality of life

Day and Jankey (1996) used a grounded theory method to develop a conceptual model

that describes the process the individual uses to evaluate one's quality of life. This model

assumes that quality of life is subj ective and reflects the individual's level of life satisfaction.

Quality of life is determined by examining and evaluating one's life circumstances.

This evaluation model is comprised of three components: the individual's life

circumstances, the individual's personality, and the evaluation process.

1. The individual's life circumstances are unique. There is an infinite array of inputs into

the determination of the life circumstances for any individual. The indicators and domains of

quality of life are included as characteristics of one' s life circumstances. The individual

compares his/her life circumstances with that of others.

2. The individual's personality influences the way in which life circumstances are

viewed and thus affects the evaluation process. Genetic disposition, one's values, and one's past

experiences influence one's personality. Personality also includes such characteristics as

optimism, perceived control over one's life, perseverance and resilience.

3. The evaluation process takes into consideration one's goals and achievements and the

external reactions of the environment. The evaluation process allows the individual to determine

the meaning of the life circumstances and make an appraisal of his/her quality of life.

Day and Jankey's model does not emphasize the domains contributing to quality of life as

did the previously discussed models. Rather, the emphasis of this model is on the process that the

individual uses to arrive at his/her perception of quality of life. The process orientation of this

model makes it appropriate for use in this research. At this point in concept development, the









constituents of quality of life are not in question. An understanding of the way a person

determines the level of his/her own quality of life is necessary before attempts can be made to

improve quality of life through treatments such as rehabilitation of stroke survivors. Thus, this

model was chosen to guide this research.

Measurement Issues

The difficulty encountered in defining quality of life also afflicts measurement of the

concept. It is essential that the method of measurement be consistent with the conceptual

definition of quality of life. The items on the measurement tool, and not the definition adopted by

the researcher, determine what is measured. If the researcher' s conceptual framework and the

instrument' s conceptual framework do not match, the researcher may not be measuring what is

intended (Kane, 1997; King et al., 1997; Mast, 1995).


Conceptualization of quality of life has been ambiguous and operationalization of the

concept varied. In addition, because of the widely varying conceptual frameworks informing

development of instruments to measure quality of life, comparing findings is very difficult.

Researchers employ numerous instruments, but commonly sited instruments are the SF-3 6, the

Sickness Impact Profile (SIP), the Stroke impact Scale (SIS), the Quality of Life Index (QLI), the

Quality of Life Survey (QOLS), and Cantrill's Self-Anchoring Scale (SAS).

SF-36

The Medical Outcomes Study (MOS) was undertaken with one goal being the

advancement of the state-of-the-art of methods used monitoring of patient outcomes in medical

practice and clinical research. From the MOS, the SF-36 (Short Form-36) was developed to

survey health status. It was designed for use in clinical practice and research, health policy

evaluations, and general population surveys (McHorney, Ware, & Raczek, 1993; Ware &









Sherbourne, 1992). The SF-36 has since been adopted as a measure of health-related quality of

life.


The items in the SF-36 were developed to measure the health concepts that are most

frequently included in widely used health surveys including: (a) physical functioning, (b) social

functioning, (c) role functioning, (d) mental health, (d) general health perceptions, (e) bodily

pain, and (f) vitality. The full-length MOS scale was used as a criterion for item selection. The

items for the instrument were constructed from a subset of items that were shown to best

reproduce the scores of the full-length, well-validated. The definition of quality of life measured

by the Sf-36 is heavily influenced by the individual's functioning and health and does not take

into account satisfaction with functional ability specifically or life in general.

SIP

The original purpose of the Sickness Impact Profile was to monitor health status and

functional performance, allowing comparisons of individuals with different types and severities

of medical conditions. Since its development in 1972 it has had extensive field-testing. The SIP

consists of 136 items grouped into six domains: physical functioning, emotional functioning,

social functioning, cognitive functioning, pain, and overall well-being. These domains are further

divided into twelve sub domains: sleep and rest, eating, work, home management, recreation and

pastimes, ambulation, mobility, body care and movement, social interaction, alertness behavior,

emotional behavior, and communication (Kane, 1997; Moinpour, McCorkle, & Saunders, 1988).

As with the SF-3 6, the definition of quality of life measured by the SIP is heavily influenced by

the individual's functional ability and does not take into account satisfaction with function

specifically or life in general.









A maj or disadvantage to using the SIP has been its length, often requiring 30 minutes to

complete. A 30 item Stroke Adapted SIP (SA-SIP) was derived from the original instrument and

has been found to be psychometrically sound (van Staten et al., 2000). The SA-SIP consists of 8

subscales: body care and movement, mobility, ambulation, social interaction, emotional

behavior, alertness behavior, communication, and household management. The subscales of

sleep and rest, recreation and past time, eating, and work were deleted.

As with the SF-36, the definition of quality of life measured by the SIP and the SA-SIP30

is heavily influenced by the individual's functional ability and does not take into account

satisfaction with function specifically or life in general. In fact, van Staten et al (2000) found that

SA-SIP30 and SIP scores showed no clear association with other psychological HRQOL

domains or with health perceptions reported by stroke survivors. Their analysis showed that The

SA-SIP30 and the SIP were primarily measures of disability rather than quality of life.

SIS

The Stroke Impact Scale was developed to comprehensively assess physical and

psychosocial well-being of stroke patients, particularly in terms of the effectiveness of

therapeutic programs for treatment of stroke. It is consistent with the World Health

Organization's model of disability. The instrument was developed following individual

interviews with stroke survivors and focus group interviews with patients, caregivers, and health

care providers. It consists of 64 items that are grouped into eight domains: strength, hand

function, ADL/instrumental ADL (IADL), mobility, communication, emotion, memory, and

participation. A question to assess the stroke survivors' global perception of percentage of

recovery from the stroke is also included. The domains of strength, hand function, mobility, and

ADL/IADL can be combined into a single physical domain score. As is the case with SF-36 and









the SIP/SA-SIP30, the definition of quality of life measured by the SIS is heavily influenced by

the individual's functional ability and does not take into account satisfaction with function

specifically or life in general. Its philosophical underpinning is that of a disability model and not

a quality of life model. (Duncan, P., Bode, R., Min Lai, S., Perera, S., Glycine Antagonist in

Neuroprotection Americans Investigators. 2003; Duncan, P. W.., Wallace, D., Studenski, S. Lai,

S. M., & Johnson, D., 2001).


QLI

Ferrans and Powers Quality of Life Index (QLI) was developed to measure the quality of

life of both healthy and chronically ill. The instrument takes into account the life domains noted

by experts in the area of quality of life, the subjective evaluation of satisfaction with domains,

and the unique importance of each domain to the individual (Ferrans, 1996; Ferrans & Powers

1985).

The QLI consists of two sections, each containing 3 5 items. The first subscale measures

satisfaction in the following eighteen areas: health care, physical health and functioning,

marriage, family, friends, stress, standard of living, occupation, education, leisure, future

retirement, peace of mind, personal faith, life goals, personal appearance, self-acceptance,

general happiness, and general satisfaction. These eighteen areas represent four domains of

quality of life: (a) health and functioning, (b) socioeconomic state, (c) psychological or spiritual

state, and (d) family. The second subscale measures the importance of the domain to the subject.

Satisfaction and level of importance are each rated on a 6 point Likert scale (Ferrans & Powers,

1985). The QLI was developed specifically to take into account the individual's valuing of each

domain and thus provides some insight into the effect of an individual's values effect the









measurement of quality of life. However, the individual items were developed from literature

review and thus are strongly influenced by the researcher' s definition of quality of life.


The QLI would be an appropriate choice for use in this study as it is conceptually

consistent with the definition of quality of life being used. However, the instrument contains 70

items. With a population which may have language deficits, difficulty concentrating, and fatigue

issues, the length of this instrument presents a significant disadvantage.

Measurement of quality of life in this study

In this study, two instruments were used to measure quality of life. The Quality Of Life

Survey (QOLS), as modified by Burkhardt and colleagues was used to obtain a domain-specific

measurement of quality of life. It is consistent with this study's the definition of quality of life. It

has been used and validated with several chronic illness populations. It is easy to administer and

is brief.


The QOLS was originally developed by Flanagan (1982, 1978) as part of a study to

define the domains of quality of life. Scale items were developed using an inductive process to

identify the areas important to individuals' quality of life. In order to represent differing points of

view and types of experiences, approximately 3,000 people from all parts of the United States

and from diverse backgrounds, ethnic groups and ages were asked to identify experiences that

were important or satisfying to them. From this data, fifteen items representing five conceptual

domains of quality of life were derived. Following additional research with chronically ill

populations, the scale was later adapted for use with chronically ill populations, which identified

"efforts to remain independent" as being important to quality of life (Burkhardt & Anderson,

2003; Burckhardt, Woods, Schultz, & Ziebarth, 1989). The current scale consists of 16 items

using a seven point Likert format to assess quality of life in five domains: (a) physical and









material well-being, (b) relations with others, (c) social, community, and civic activities, (d)

personal development and fulfillment, and (e) recreation. The subject is asked to rate how well

these quality of life items are met. Response choices are (1) "terrible", (2) "unhappy", (3)

"mostly dissatisfied", (4) "mixed", (5) "mostly satisfied", (6) "pleased", and (7) "delighted".

Total score can range from 16 to 112. A higher score represents a higher quality of life. Average

total score for healthy populations is about 90 (Burkhardt & Anderson, 2003).The QOLS has

been used with a variety of populations including healthy adults, as well as adults with chronic

illnesses including rheumatic diseases, fibromyalgia, chronic obstructive pulmonary disease,

gastrointestinal disorders, cardiac disease, spinal cord injury, psoriasis, urinary stress

incontinence, posttraumatic stress disorder, and diabetes (Burkhardt & Anderson, 2003).

In this study quality of life was also assessed using Cantril's Self-Anchoring Striving

Scale (SASS). The SASS was chosen for use in this study because it is able to reflect the

subjective and multidimensional nature of quality of life. The SASS was originally developed for

use in a multi-national, multi-cultural study to assess a person' s general sense of well-being at

three points in time: past, present, and future. The scale was based on the premise that each

individual's expression of concerns, values and life perception can be used to establish top and

bottom points of a self-defined measurement continuum. Cantril (1965) notes that it is

particularly adaptable for studying highly subjective concepts.

The SASS consists of a representation of a 10-step ladder with the top and bottom rungs

of the ladder representing each extreme of the construct being measured. Self-anchoring refers

to the methodology of asking the person to define/describe each end of the continuum, in this

case quality of life. Thus, the resulting data are both numerical and narrative. By allowing the

subj ect to define the scale' s anchors on an individual basis, there is an improved opportunity for









understanding the meaning of the numerical rating. The scale has been used to measure quality

of life of individuals undergoing hemodyalisis, individuals with coronary artery disease, with

COPD, and with seizure disorder (Hartshorn & Byers, 1994; Hoothay, DeStefano, Leary, &

Foley-Hartel, 1990). Carpenter (1996) adapted the methodology and scale to study self-esteem.

Functional Ability

The concept of functional ability and the relationship of disability to handicap are

described in this section. Measurement issues of functional ability are discussed. The relationship

of quality of life and functional ability is discussed.

There is considerable agreement among authors that self-care and mobility are central

elements of functional status. However, this narrow focus does not adequately describe the

concept. In actuality, functional ability is a multidimensional concept that encompasses the entire

domain of functioning. It is indicative of an individual's ability to complete those activities that

people do in the normal course of their lives to meet basic needs, fulfill usual roles, and maintain

their health. Functional ability necessarily includes physical functioning, cognitive functioning,

and communication (Haas, 1999; Kelly-Hayes, 1996; Moinpour, C., McCorkle, R.; Saunder, J.,

1988). Functional ability also includes the concepts functional capacity, functional performance,

functional reserve, and functional capacity utilization (Leidy, 1994).

Functional capacity is the individual's maximum potential to perform activities, or the

functional level an individual is capable of accomplishing. Functional capacity will vary among

individuals depending on one's genetic predisposition, as well as acquired physical and cognitive

factors.

Functional performance is the functional level at which the individual is actually

performing regularly to meet basic needs, fulfill usual roles, and maintain health and well-being.

Functional performance is strongly influenced by individual choice and includes those activities









that an individual values and desires to perform, within the limits imposed by one's functional

capacity. An individual's functional performance rarely equals his/her functional capacity. The

degree to which an individual values a particular activity will determine how much effort and

how many resources the individual will commit to performing the activity.

Functional reserve and functional capacity utilization are components of the difference

between one's functional capacity and functional performance. They reflect the resources an

individual has in reserve for times of perceived need.

Disability and Handicap

A disability results if functional ability is impaired to the point that an individual is

limited or unable to fulfill normal roles (depending on age, sex, and social and cultural factors).

Functional capacity can be augmented by using assistive devices and adaptive strategies. In some

cases, the individual can adapt to the disability to the extent that the individual does not

experience role dysfunction. However, if a role dysfunction exists even with the use of assistive

devices and adaptive strategies, a handicap exists (World Health Organization, 1980).

According to the World Health Organization' s Model of Disablement(1980), the six areas that a

disability can specifically result in a handicap are a) orientation, b) physical independence, c)

mobility, d) occupation, e) social integration, and f) economic self-sufficiency.

Thus, functional ability is more than one's ability to perform a specific movement or

activity of daily living. However, rehabilitation focuses on restoring, improving, and

maintaining function in everyday living (Granger, 1998), emphasizing functional abilities

related to physical functioning and being able to perform activities of daily living.

Occupation, social integration, and economic self-sufficiency are largely ignored.

Instruments used in rehabilitation to measure functional ability also emphasize physical










independence and mobility (Granger et. al, 1986). Some instruments measure

functional performance, while others measure functional capacity.

Measurement Issues

A maj or problem with functional status assessment is that researchers have been

inconsistent with its operationalization. Researchers have measured functional status in

numerous ways, ranging from concrete measures of self-care to global measures of health, work

activities and socialization. Thus, it is important to be clear about the purpose of the

measurement and from this determine which domains of functional status are appropriate to

measure within the context of a particular study (Moinpour, McCorkle, Saunder, 1988).

Numerous standard instruments for measuring individual performance are currently

available (Moinpour, McCorkle, & Saunder, 1988). This measurement method offers the

advantage that scores can be used to monitor clinical changes over time as well as to compare

results within or between groups. Numerous conceptually different instruments have been used

to measure functional ability, making comparison of results difficult. Using an instrument that is

widely accepted and used by rehabilitation professionals would strengthen the study.

Assessment of functional status can be achieved by questioning the individual about

his/her current level of functioning or by direct observation. The method used depends upon the

purpose of the assessment. Behavior recall techniques typically have questionable reliability

(Bernard, 1995). In a study comparing self-report versus actual performance, Sinoff and Ore

(1997) found that mean self-report score was consistently higher than actual performance scores

on the Barthel Index. Conversely, in a study comparing results on direct observation scoring on

the Functional Independence Measure versus the telephone interview format (FONE FIM),

Chang, Chan, Slaughter, and Cartwright (1997b) found that the telephone format consistently

generated lower estimates than did the observational format. Thus, using this method to measure










response to a rehabilitation program would be suboptimal. However, when an estimation of

function is the goal, self-report is often acceptable.

Two instruments that have been widely used in stroke research are the Functional

Independence Measure (FIM) and the Barthel Index (BI).

The Functional Independence Measure

The FIM is currently the most commonly used functional assessment in both clinical

practice and research. The FIM was designed to measure severity of disability and level of

independence, to measure change over time (particularly while participating in a rehabilitation

program), and to predict burden of care. Thus, it measures actual performance rather than

capacity (Uniform Data System for Medical Rehabilitation, 1996). It consists of a seven-point

scale that designates maj or gradations in behavior from dependence to independence and

assesses the areas of self-care, sphincter control, mobility, locomotion, communication, and

social cognition (Granger, 1998). The administration time for the FIM is approximately 40

minutes. An alternative form, the FONE FIM, has been developed for follow-up of clients after

discharge from rehabilitation and is to be administered over the telephone. This form includes all

the same function areas and takes approximately 20 minutes to administer.

The FIM is a copy-righted, proprietary instrument. Permission to use the instrument

must be obtained prior to using it and the instrument must be purchased. Training must also be

obtained, which can cost several hundred dollars (Uniform Data System for Medical

Rehabilitation, 1996).

Barthel Index

The BI has also been widely used as a measure of disability. It was designed to measure

level of independence in basic activities of daily living (Kelly-Hayes, 1996; Neal, 1998). A 100-

point scale is used to create a weighted measure of self-care activities of feeding, grooming,









bathing, dressing, toileting, bowel/bladder continence, walking, climbing stairs, and chair/bed

transfers (Kane, 1997; Kelly-Hayes, 1996; Moinpour, McCorkle, Saunders, 1988; Neal, 1998).

Typically, actual performance, rather than capacity is measured. The instrument may be

administered by direct observation, by self-report of ability, or by report of a care-giver (Korner-

Bitensky & Wood-Dauphinee, 1995; Neal, 1998). As noted by its developers, an advantage of

the BI is its simplicity (Mahoney & Barthel, 1965). The instrument has only ten items and does

not require extensive clinical knowledge to administer. Administration of the instrument using

the self-report method can be completed in five minutes or less (Monipour, McCorkle, &

Saunders, 1988).

This study is being conducted with stroke survivors living in the community. The

researcher would not have the opportunity to observe the subj ect performing the various

activities addressed by the FIM or the BI. Also, using a direct observation administration

method would substantially increase the administration length and would maximize the

intrusiveness of the instrument. For this reason functional ability was measured using self-

report.

The FIM has in recent years become widely accepted in rehabilitation practice and

research, making it an obvious choice for this study. Two disadvantages exist that resulted in

excluding it from use in the study. First, the FIM does not lend itself to self-report. The FONE

FIM is quite detailed and lengthy and would require at least 20 minutes to administer. Because of

the number of instruments being used in this study, the instrument that provides the briefest

adequate measurement of the variable has an advantage. Second, because it is a proprietary

instrument requiring a fee to purchase it and a fee to receive training, the cost to using it in this

study was prohibitive.









The BI has also been widely used in disability and research literature. It is conceptually

compatible with the study; it is appropriate for the study population; and it is psychometrically

sound. The BI has the distinct advantage that it is brief, taking five minutes or less to administer,

and is amenable to being reported by self-report. It is in the public domain, so no fee is required

to use the instrument. For these reasons, the BI was chosen for use in this study.

Quality of Life and Functional Ability

Each of the models of quality of life described above includes functional ability. Felce

and Perry's (1996) domain of physical well-being includes fitness and mobility. The domain of

development and activity includes independence, productivity, and activity. Ferrans' (1996)

model identifies a health and functioning domain, which includes most areas of physical and role

functioning. Ferrell's (1991) physical well-being and symptoms domain includes physical

functional ability. Role functioning is included under the social well-being domain.

Based on these models of quality of life, one would expect quality of life and functional

ability to be highly correlated. However, while functional ability may be related to quality of life,

the relationship is unclear. Research has shown little support for a relationship between quality

of life and functional ability. Discovering this relationship is further hindered by the use of

widely varying methods of operationalizing quality of life and the use of quality of life

instruments that actually measure function or disability. Ahlsio, Britton, Murray, and Theorell

(1984) found that even though stroke survivors' functional ability improved, their perceived

quality of life did not necessarily improve. King (1996) found that level of functioning was a

weak predictor of quality of life in stroke survivors. Bethoux, Calmels, & Gautheron (1999)

found that quality of life in stroke survivors may deteriorate somewhat over time while disability

level remained unchanged. In studies of spinal cord injured persons, individuals possessed a

positive level of life satisfaction in general, but there was no correlation found between quality of









life and functional level (Dunnum, 1990; Siosteen.et al., 1990). In a study of individuals with

amyotrophic lateral sclerosis, Cardol et al (1996) found no significant correlation between level

of functioning and quality of life.

Wilcock' s (1998) doing-being-becoming framework for describing human occupation

provides some useful insight into the relationship of function to life. Wilcock discusses human

occupation as a synthesis of doing, being, and becoming. Occupation in this context is more than

that activity undertaken to provide income to support oneself. "Doing" is the active portion of

occupation and is the most readily observable portion and the most familiar. Wilcock discusses

purposeful "doing" as an activity that humans engage in almost continuously, ranging from

things that individuals think they must do to things they want to do. "Doing" can over power the

individual's existence, negatively affecting health and well-being. The concept of "being" is

fundamental to philosophical inquiry and has been pondered by philosophers throughout the

ages. It involves contemplation and enj oyment of the inner life, including being true to oneself

and one's nature. "Being" requires taking time to reflect on what is the essence and important to

the individual. "Becoming" is the transformative element involving developing, changing,

growing. Human occupation involves all three of these elements. In order to maximize health

and well-being, people strive for balance among these dimensions in their occupational lives.

Wilcock' s conceptual framework for human occupation identifies the importance of

doing/functioning in human life, but also identifies that there is more to human occupation, or

functioning, than just doing. This framework emphasizes the importance of balancing

doing/functioning with being and becoming. Through "being" the individual is able to reflect

inwardly ascertain what is important to him or herself and make judgments as to the state of

his/her life in relation to his or her occupation. This inward reflection is essential to the









perception of one' s quality of life (Felce & Perry, 1996). Through "becoming" the individual can

learn and grow, maximizing occupational potential. Health is maximized by achieving balance

among doing, being and becoming in one's occupational realm.

Meaningful Function

In this section the concept of meaningful function is discussed. Included in this

discussion are the relationship of meaningful function and handicap, the concepts of normalcy,

valued activities, and independence/mastery .

Subj activity of Functional Ability

Functional ability has a subjective aspect. The value an individual places on an activity

or the perceived need to perform an activity affects an individual's functional performance

(Leidy, 1994). The individual's values, beliefs, and life circumstances will determine the relative

importance of a specific functional ability, just as the individual's values, belief, and life

circumstances determine the relative importance of other various factors in an individual's life

leading at the perception of quality of life. The relative perceived importance of an activity is

what determines which functions are meaningful for an individual.

Meaningful Function and Handicap

An individual's functional performance does not necessarily reflect actual functional

capacity or the presence/degree of disability. The presence of a disability will limit an

individual's functional capacity. However, the presence of a handicap (i.e. interference with role

function) is often more a function of the individual's response to the disability than the actual

disability. The individual will interpret the experience of a disability within the context of his/her

life and will give meaning to the experience (Delaney & Potter, 1993; Farzan, 1991; World

Health Organization, 1980). The individual, with unique strengths, weaknesses, life experiences,









perception of the disability, coping mechanisms and available resources, largely determines to

what degree the disability will affect his/her life and cause handicap.

Recovery from acquired disabilities is often defined by the affected individual in terms of

a return to activities important to the individual and to a reconnection to pre-disability concerns

and social practices. This definition incorporates the individual's belief about normalcy,

continuity with previous life experiences, capabilities, and consistency with one's self-identity

(Doolittle, 1990). Thus, the ability to walk in itself may not be highly valued by a particular

stroke survivor; however, the activities that require being able to walk may be highly valued.

Normalcy

Rehabilitation in the United States has traditionally emphasized independence and

recovery of function. Thus, strategies are aimed at maximizing functional abilities. However,

those receiving the rehabilitation services do not always share this value. Recovery from

acquired disabilities is often defined by the affected individual in terms of a return to activities

important to the individual and to a reconnection to pre-disability concerns and social practices.

This definition incorporates the individual's belief about normalcy, continuity with previous life

experiences, capabilities, and consistency with one's self-identity (Doolittle, 1990).

The concept of being normal has been identified in many studies as being integral to an

individual's recovery process. Normalcy was often related to resuming adult societal roles, such

as returning to work, participating in personal relationships, and seeing oneself as capable and

self-determining (Baker & Stern, 1993; Carpenter, 1994; Krefting, 1989).

Valued Activities

As discussed above, recovery from acquired disabilities is often measured by returning to

valued activities and a reconnection to pre-disability concerns and social practices. This concept

has been described in some qualitative studies of recovery from disability.









In a qualitative study involving five individuals with cerebral palsy, Kibele (1989)

described the limitation of the medical rehabilitation model with cerebral palsy patients. These

individuals remembered the value placed by the rehabilitation professionals on ambulation at all

costs and on maximization of self-reliance. In their adult lives, these individuals did not share

these values as indicators of their quality of life, but chose to use other forms of locomotion and

to use care attendants to complete activities of daily living in order to free up time and energy to

pursue other more valued activities.

The conclusions from Kibele' s (1989) study mirror some of the conclusions made by

Doolittle (1990) in her phenomenological study of the experience of recovery following stroke.

The participants in Doolittle's study defined recovery as the return to activities important to the

individual. Functional abilities in themselves were not considered important to recovery.

However, the return to purposeful activity was found to be an important indicator of stroke

recovery. Similarly, Cardol et al (1996) found in their study with amyotrophic lateral sclerosis

patients that meaningful and purposeful activity positively contributed to perceived quality of

life.


Clarke and Black (2005) studied more specifically post-stroke quality of life and the

relationships of residual physical and cognitive deficits, also using qualitative interview process.

They identified common elements of adapting to functional disability, which resulted in high

levels of self-perceived quality of life. Common elements involved in this process included

reordering priorities to focus on activities important to the individual, drawing on personal,

community, and social support resources to continue some level of customary activity, retaining

salient aspects of individual identity and maintaining a sense of continuity in his/her life.









Independence and Mastery

Different from an objective measurement of functional ability, independence and mastery

issues are subj ective issues related to the perceptions the individual has concerning his/her

abilities based on comparisons with pre-disability status and with societal expectations.

Secrest and Thomas' (1999) phenomenological study of quality of life following stroke

found that a stroke survivor's life is characterized by (a) a pervasive feeling of loss, (b) a

perception that all activity required tremendous effort to accomplish, ( c) being in control versus

out of control, and (d) connection with others versus disconnection from others.

Independence/dependence issues often centered on comparisons of life before and after the

stroke. Much of the perceived disability described by the participants was unseen by others

observing the stroke survivor. Bendz (2003), in a phenomenologic study of stroke survivors in

the first year of rehabilitation, also identifies the subj ective issues of stroke recovery. In this

study stroke survivors described a feeling of loss of control, fatigue, and a fear of relapse. Their

health care providers ignored these aspects of the stroke, focusing on reduced function and

training. Robinson-Smith (2002) describes the concept of self-care self-efficacy, which is the

confidence a person has in his or her ability to perform relevant self-care activities. This is

distinct from the person's actual functional ability. In a study of self-care self-efficacy and

quality of life of stroke survivors, she found that self-care self-efficacy was strongly correlated

with quality of life and depression. Where as functional ability was only modestly correlated

with quality of life.

In studies of individuals with chronic illnesses including multiple sclerosis, rheumatoid

arthritis and diabetes, higher levels of perceived quality of life have been associated with higher









levels of perceived independence (Burckhardt et al., 1989), lower levels of perceived dysfunction

and higher levels of perceived mastery and control over one' s life (Jeffrey, 1989).

These studies indicate that functional ability includes more than the characteristics that

can be measured on obj ective physical functioning measures. Functional ability in areas valued

by the individual determines the level of meaningful function the individual can perform. The

concept of meaningful function arises from the subj ective aspect of functional abilities and

reflects the meaning of the disability to the individual, the individual's beliefs and values as well

as sociocultural mores. Qualitative studies of quality of life indicate that level of meaningful

function is related to one' s perceived level of quality of life.












CHAPTER 3
IVETHODOLOGY

Introduction


A goal of this study was to advance the understanding of the concept of quality of life by

exploring the relationships of selected variables as described by Day and Jankey. The variables

of particular interest are functional ability and level of meaningful function as perceived by

stroke survivors who are from three months to five years post stroke. Day and Jankey's (1996)

model of the evaluation process of quality of life describes the process that an individual uses to

evaluate one' s quality of life and takes into consideration life circumstances, personality, and

individual's goal and achievements, as well as the external reactions of the environment. The

specific questions addressed by this research are: (a) are there relationships among perceived

quality of life, meaningful functioning, functional ability, depression, social support, age, and

length of time since stroke; (b) what terms do stroke survivors use to describe quality of life; (c)

what terms do stroke survivors use to describe meaningful function; and (d) to what extent do

the variables meaningful functioning, functional ability, depression, social support, age, and

length of time since stroke predict quality of life in stroke survivors? Because the variables

depression and social support have consistently been found to be correlated with quality of life of

stroke survivors, these variables have been included in the study in order that their influence can

be taken into consideration.


This chapter is divided into four sections. In the first section the subj ect sample is

described. The second section contains a description of study design and procedures used to









collect the data. The instruments for data collection are described in section three. Section four

includes a description of the statistical analysis of the research questions.


Subject Sample

Subject Selection

Permission to conduct the study was first obtained from the Institutional Review Board

of the University Health Center. Following approval, a convenience sample of several possible

recruiting sources was identified. These sources included health care providers' practices, home

health agencies, community agencies including stroke support groups and senior citizen centers,

community newsletters, and newspapers. Recruiting was accomplished by posting flyers and by

talking to community groups. Permission to recruit subj ects from the patient populations in

health care provider practices, home health agencies, and community organization was obtained

from each provider or the manager of each organization. Recruiting began in February, 2003 and

continued until June 1, 2006, when 70 subjects had completed all instruments.

Inclusion/exclusion criteria


To be included in the study sample, a potential subj ect had to: (a) be between the ages of

18 years to 85 years, (b) be three months to 5 years post-stroke by self-report, (c) have a residual

stroke deficit, (d) be sufficiently alert and oriented to be able to respond and interact with others,

(e) have sufficiently intact English language skills to communicate with the investigator, and (f)

live in a home setting.


Persons who have had the stroke secondary to head trauma (as determined by self-

reported history) and those who had co-existing health problems that also result in functional

deficits (such as: lower extremity amputation, pulmonary or cardiac disease interfering with

activity, terminal illness) were excluded from the study.










Demographic characteristics


The demographic characteristics sex, race, age, marital status, number of children, living

arrangements, health of spouse, occupation, income, education and months since stroke of the

sample are presented in Table 3-1. Forty (57. 14%) of the subj ects were male and 30 (42.86%)

were female. Sixty-one of the subj ects (87%) were white/Caucasian. Age range was from 45 yrs

to 80 yrs with a mean of 63.67 yrs. The maj ority of the sample was between 60 and 85 years of

age. Sixty-three percent of the subj ects were between the ages of 60-79 years. The maj ority of

the subj ects were married (61%) and of these, 62% (44 subj ects) lived with their spouses. The

maj ority of the spouses were in good health (80%), but twenty percent (9 spouses) of the spouses

also had significant health problems. The majority of the subjects had children (89%). Only 11%

lived with a child. Twenty-three percent (16 subj ects) of the subj ects lived alone. The maj ority of

the subj ects (85.71%) were unemployed following the stroke. Six subj ects (8.71%) were able to

return to full time employment in the same occupation as prior to the stroke. Eighty-nine percent

of the subj ects (62 subj ects) reported an annual income of $40,000 or less, with 34% (24

subj ects) reporting an income of less than $20,000. Educational level ranged from 9 years of

schooling to post-graduate education, with a mean of 12.97 years of education. The maj ority of

the subjects (49%) were high school graduates. The subjects ranged from 3 months to 55 months

post stroke. Mean length post stroke was 28.7 months. The maj ority of subj ects (30%) were from

3 to 12 months post stroke. However, fifty-four percent were more than 2 years post-stroke.

Deficit characteristics

All subj ects had some degree of residual neurologic deficit. These data are presented in

Table 3-2. Sixty-seven (95.71%) subjects had a motor deficit. The majority of subjects (61.43%)

had right side deficits. Fifty-two percent of the subj ects (37 subj ects) had residual right










hemiparesis, while 8.57% (6 subj ects) had residual total right sided hemiplegia. Right sided

hemiparesis or hemiplegia are often associated with aphasia. Fifty percent (3 5 subj ects) of this

sample were aphaisic to some degree. Twenty-two subj ects (3 1.43%) had residual cognitive

deficits. Forty-six subj ects (65.71) subj ects had more than one deficit.

Co-existing health problems


These data are presented in Table 3-3. Review of systems questionnaire was used to

assess each subj ect for co-existing health problems in the areas of sight (the presence of

difficulty with vision to read, watch television, pursue hobbies or drive), hearing (the presence of

difficulty to hear radio/television, to carry on conversation, use the telephone), cardiovascular

disease (the presence of angina or peripheral vascular disease), respiratory disease (the presence

of asthma, shortness of breath, need for oxygen), musculoskeletal disease (the presence of

musculoskeletal pain) and other neurological diseases (seizure disorder, Parkinson's Disease,

multiple sclerosis) that could also cause functional deficits. No subject had a co-existing health

problem severe enough to limit the subj ect' s activity. Twenty-five subj ects (3 5.71%) denied co-

existing health problems. The most prevalent co-existing health problem was musculoskeletal

pain, followed by cardiovascular disease, visual problems, and respiratory disease.



Study Design and Procedures

Information about the study was communicated to potential subj ects using a flyer. The

flyer included the explanation that the purpose of the research is to explore the effect of a stroke

on the individual. An estimation of the time commitment involved was given. Instructions on

the flyer directed potential subj ects to contact the researcher in the following ways:










1. Telephone the researcher at her home telephone number. Upon calling this number,

either the researcher answered the telephone or the call was answered by an answering machine

with a message (in the researcher's voice) asking the caller to please leave name, telephone

number, and a message and the call would be returned as soon as possible".


2. Contact the researcher at her email address listed on the flyer. The potential subject

was instructed to leave his/her name and a means of contacting the individual on the email

message.


When the researcher received the name and means of contacting a potential subj ect, the

researcher contacted the potential subj ect by telephone or email (see no. 2, flyer information).

The researcher introduced herself as a registered nurse who was pursuing a doctoral degree in

nursing and explained that the research was being done to explore the effect of stroke on the

individual. The researcher again described the purpose of the study and the data collection

methods. The potential subj ect was told that he/she would be asked to complete from one to

eight questionnaires about the stroke and his/her life. Since it was possible that a potential

subject would not meet inclusion criteria or would meet exclusion criteria, some potential

subjects could have only completed the screening instruments. Because of this, the time

commitment varied from 15 minutes to 90 minutes. Potential subjects were informed that (a)

participation was voluntary, (b) they were free to discontinue participation at any point, (c) a

written consent would be obtained, which would include consent to audio-tape responses to

interview questions, and (d) numerical codes would be used to identify an individual's responses,

protecting confidentiality. When a person agreed to participate in the study, an appointment was

made to meet with the potential subj ect within a week at a time and place convenient for the

potential subj ect. At the first face to face meeting, the researcher again introduced herself as a










registered nurse who was pursuing a doctoral degree in nursing and explained that the research

was being done to explore the effect of stroke on the individual. Written consent was obtained

(Appendix A). The researcher assigned each subject a numerical code. This numerical code was

used on all documents pertaining to that individual subj ect in order to protect the subj ect' s

confidentiality.


The researcher administered the instruments using an interview format in the following

order:


1. Mini Mental Status Exam (MMSE)(appendix B). The instrument was scored prior to

continuing. The potential subject had to score 18 or higher to be included in the study. If a

potential subj ect did not score 18 or higher, the researcher ended the data collection by saying

the following: "Thank you very much for agreeing to participate in this study. This information

will be very helpful". If the potential subject asked why only one questionnaire was completed,

the researcher explained to him/her that because of the way the study was designed individuals

would be asked to complete different combinations of questionnaires. This one questionnaire

was the only one he/she was to complete.


2. The demographic questionnaire (appendix C).


3. The review of systems questionnaire (appendix D). The potential subject could not

have other illnesses or conditions resulting in functional deficits. If the potential subject had a

functional deficit due to other illnesses or conditions, the researcher ended the data collection by

saying the following: "Thank you very much for agreeing to participate in this study. This

information will be very helpful". If the potential subject asked why only three questionnaires

were completed, the researcher explained to him/her that because of the way the study was










designed, individuals would be asked to complete different combinations and numbers of

questionnaires. These three questionnaires were the only ones he/she was to complete.

4. The Barthel Index (BI) (appendix E).


5. Quality of Life Survey (QOLS) (appendix F).

6. Cantril's Self-Anchoring Striving Scale for Quality of Life (SASS/QOL) (appendix

G). The subj ect was asked to describe his/her best possible life then the worst possible life. The

subj ect was then shown a model of a ladder with ten rungs. The bottom rung will be numbered

"1" and the top rung was numbered 10". The subj ect was asked: if the best possible life as

you just described it is the top rung, a '10', and the worst possible life as you just described it is

the bottom rung, a '1', where on this ladder do you stand today?" Once the subj ect answered this

question, he/she was asked "and where on this ladder did you stand before you had the stroke?"

Both the descriptions of the best possible life and the worst possible life and the subj ect' s

response to the questions were audio-taped and then transcribed verbatim. The audio-tapes were

erased as soon as the data were transcribed.


7. Cantril's Self-Anchoring Striving Scale for Meaningful Function (SASS/MF)

(appendix H). The subj ect was asked to describe the five most meaningful and/or important

activities in his/her life currently. The subj ect was then asked to describe his/her life in the worst

possible light in terms of these identified important activities. The subject will then shown a

model of a ladder with ten rungs. The bottom rung was numbered "1" and the top rung was

numbered "10". The subj ect was asked: "if a the top rung is a' 10' and represents the best

possible life in terms of the activities most meaningful to you and the bottom rung, a '1',

represents the worst, where on this ladder do you stand today?" Once the subj ect answered this

question, he/she was asked "and where on this ladder did you stand before you had the stroke?"









Both the descriptions of the most meaningful/important activities and the subj ect' s response to

the questions were audio-taped and then transcribed verbatim. The audio-tapes were erased as

soon as the data were transcribed.


8. The Center for Epidemiologic Studies-Depression (CES-D) (appendix I). If the

potential subject achieved a score of 21 or greater, indicating a possible depression, the

researcher indicated to the potential subj ect that the score on this instrument indicated that he/she

may have some depression. The researcher further discussed this with the individual and urged

the individual to discuss this with his/her primary care provider


9. The Perceived Social Support from Friends (PSS-FR) and the Perceived Social

Support from Family (PSS-FA) (appendix J) to measure social support.

The entire session was completed in 30 to 90 minutes. If the subject stated he/she was

tired or began to appear fatigued, he/she would have been given the option to rest or to schedule

another meeting to complete data collection, or to withdraw from the study. If a second meeting

would have been needed, it would have been scheduled as soon as possible following the first

visit and at the convenience of the subj ect. Because orientation can fluctuate, the MMSE would

be repeated at the beginning of the second session to reassess orientation. However, a second

meeting was not needed by any subj ect.

Instruments

Mini Mental State Exam

The Mini Mental State Exam (MMSE) (Appendix B)was used to assess the orientation

and ability of potential subj ects to understand and to respond to questions, as well as to measure

of the cognitive portion of functional ability. Developed as a screening tool to quantitatively

assess the severity of cognitive impairment and to document changes in cognition over time, the









MMSE is an 11 item interview administered tool. The score is the sum of correct responses and

ranges from 0 to 30. A score of 23 or less is generally accepted as indicating the presence of

cognitive impairment. The severity of the cognitive impairment can be classified into three

levels: 24 to 30 = no impairment; 18 to 23 = mild cognitive impairment; and 0 to 17 = severe

impairment (Tombaugh & McIntyre, 1992). The MMSE can be administered in 5 to 10 minutes.

The MMSE was used to measure cognitive functional ability and to document that the subj ect' s

cognitive abilities were sufficiently intact to allow the subj ect to understand and interact with the

researcher (for this purpose a score of 18 or higher was required).


Reliability

The MMSE has good reliability. Test-retest reliability coefficients range from .80 to .98

Inter-rater reliability are reported as .82 and internal consistency as .96 (Anthony et al., 1982;

Tombaugh & McIntyre, 1992).

Validity

The MMSE has been subjected to numerous validity studies. Construct validity is

supported by the ability of the MMSE to distinguish among people with diagnoses of delirium or

dementia, depression, schizophrenia, and elderly control subjects with no psychiatric diagnosis

(Fraser, 1988). Evidence of convergent construct validity is the finding of statistically significant

and high correlations (.83 to .88) between the MMSE and three measures of cognitive

impairment. In addition, a statistically significant correlation between the MMSE and the

Wechsler Adult Intelligence Subscale has been found. Discriminant construct validity is

supported by a low negative correlation (-.38) reported with a depression measure (Foreman,

1987; Tombaugh & McIntyre, 1992).









The MMSE is in the public domain, so no permission to use the instrument was required.

The MMSE was chosen for this study because it has been widely used and validated in screening

for cognitive impairment.

Demographic Questionnaire

A demographic questionnaire (Appendix C) was used to gather data on selected factors

which constitute personal attributes in Day and Jenkey's model. These attributes included sex,

race, age, marital status, number of children, living arrangements, spouse's health, occupation,

income, educational level, and months post stroke.

Review of Systems

A brief review of systems (appendix D) was obtained to determine the type of deficit

present following the stroke and to determine if the subject had other co-existing health problems

that also interfered with functional ability. Co-existing health problems, such as peripheral

vascular disease that interferes with walking, pulmonary or cardiac disease that interferes with

activity, terminal illness, may also result in functional deficits or worsen the deficit secondary to

the stroke. The presence of other health problems severe enough to affect functional ability may

also introduce other unknown variables that affect quality of life. Therefore, individuals with co-

existing health problems resulting in functional deficits were excluded from this study. The

review of systems included assessment these systems: neurological, special senses/hearing and

sight, cardiovascular, respiratory, and musculoskeletal.

Barthel Index

The Barthel Index (BI) (appendix E) was used to measure functional ability in this study.

It has been widely adopted as a measure of disability. It was designed to measure level of

independence in basic activities of daily living (Neal, 1998). A 100-point scale is used to create a

weighted measure of self-care activities of feeding, grooming, bathing, dressing, toileting,









bowel/bladder continence, walking, climbing stairs, and chair/bed transfers. Each activity is

rated a 0, 5, 10, or 15 depending on the activity and whether the individual needs assistance in

performing it. Though the scores for each activity are often combined into a total score, the total

score is not as meaningful as reporting the score for each activity, since the individual items

indicate where the deficiencies lie. If a total score is used, there is a possible range in scores

from 0 (total dependence) to 100 (total independence). A score of 100 indicates that the

individual is continent, feeds himself, dresses himself, gets up out of bed and chairs, bathes

himself, walks at least a block, and can climb stairs. This does not mean that the individual is

able to live alone. He/she may not be able to perform any of the more complex activities of daily

living such as cooking, keeping house, and meeting the public/communicating (Kane, 1997;

Mahoney & Barthel, 1965; Moinpour, McCorkle, Saunders, 1988; Neal, 1998). The literature

does not specify whether actual performance or capacity should be measured. The instrument

may be administered by direct observation, by self-report of ability, or by report of a care-giver

(Komer-Bitensky & Wood-Dauphinee, 1995; Neal, 1998). In this study the instrument was

administered by self-report of the subj ect' s ability.

Reliability

The BI has good reliability. The BI has been found to have an internal consistency

(Cronbach's alpha) ranging from .94 to .98 (Komer-Bitensky & Wood-Dauphinee, 1995;

Moinpour, McCorkle, & Saunders, 1988; Shah, Cooper, & Maas, 1991). Test-retest reliability

coefficients have ranged from .89 to .98 (Shah, Cooper, & Maas, 1991).

Validity

In terms of content validity, the BI has face validity. The BI measures what it purports to

measure, activities of daily living. Construct validity is the extent to which the instrument will

discriminate between those who possess and those who do not possess the attribute being









measured. Construct validity is supported by factor analysis with a varimax rotation which

showed a high degree of communality attributed to each item with a minimal acceptable value of

0.44 to 0.77 (Shah, Cooper, & Maas, 1991). Conversely, construct validity can be questioned

based on a study by McPherson & Pentland (1997) in which the BI was unable to identify

disability in a group of 54 traumatically brain-injured patients. Criterion-related validity

includes both predictive validity and concurrent validity. In terms of predictive validity, a

Barthel score lower than 40 was predictive of fewer discharges home and scores higher than 60

were predictive of a shorter length of stay. In addition, in a study of 486 stroke rehabilitation

patients, the BI was able to predict six-month post-stroke mortality (Korner-Bitensky & Wood-

Dauphinee, 1995). Concurrent validity was supported in a study of 150 patients 1 year post-

stroke in which the BI correlated reasonably well with the Office of Population Censuses and

Surveys (OPCS) (Wellwood, Denniss, & Warlow, 1995).

The BI is in the public domain, so no permission to use the instrument was required. The

BI was chosen for this study because it has been widely used and validated in screening for

functional ability and is brief.

Quality of Life Survey

In order to strengthen the validity of the study by triangulating measures, quality of life

was measured using two instruments, the Quality of Life Survey (QOLS) (appendix F) and

Cantril's Self-Anchoring Striving Scale (SASS) (appendix G). The Quality of Life Survey

(QOLS) is a 16 item Likert-type rating scale that measures satisfaction in five domains of quality

of life : physical and material well-being; relations with others; social, community, and civic

activities; personal development and fulfillment; and recreation. Using a 7-point rating scale, the

subj ect is asked to rate how well these quality of life items are met, ranging from terrible (1) to









delighted (7). Total score can range from 16 to 112. A higher score represents a higher quality of

life (Burkhardt & Anderson, 2003). The scale was administered using an interview format and

took approximately 5 minutes to complete.

Reliability

The QOLS has been found to have acceptable reliability. The QOLS has been found to

have an internal consistency (Cronbach's alpha) ranging from .82 to .92. Test-retest reliability

coefficients have been slightly low ranging from .78 to .84 at three week intervals and .76 at a

six week interval (Burchhardt, Woods, Schultz, & Ziebarth, 1993, 1989). This may be due to the

changing nature of perceived quality of life.

Validity

Content validity is supported by the fact that it was developed using inductive research to

identify the domains of quality of life in a sample of 3000 adults. In addition, the domains

identified by this research are consistent with the domains identified by research done by Ferrans

and Powers (1985) and Ferrell (1991).

Convergent construct validity of the QOLS has been assessed in a study comparing the

QOLS with other measures of quality of life. In assessing convergent validity, results on the

QOLS were correlated with results on the Life Satisfaction Index, a tool that assesses a person's

global life satisfaction. The correlation coefficients ranged from .67 to .75.

In assessing discriminant construct validity, results on the QOLS were correlated with

results on the Duke-UNC Health Profie (DUHP), the Arthritis Impact Measurement Scales

(AIMS), and the Ostomy Adjustment Scale (OAS). The Duke-UNC Health Profie is a scale

designed to assess adult health status in four dimensions: symptom status, social function,

physical function, and emotional function. The Arthritis Impact Measurement Scales is a scale

used with persons with arthritis to assesses health status in three dimensions: physical function,










psychological function, and pain). The Ostomy Adjustment Scale is used to measure adjustment

to physical, psychological, and social changes that occur after ostomy surgery. Correlation of the

DUHP with the QOLS ranged from .25 to .61. Correlation of the AIMS with the QOLS ranged

from -.29 to -.39. Correlation of the OAS with the QOLS ranged from .36 to .43 (Burchhardt,

Woods, Schultz, and Ziebarth, 1993, 1989). Because these scales measure health status primarily

and quality of life is related to, but not the same as, health status, low to moderate correlations

were anticipated.

The QOLS was used in this study to provide a domain-specific measurement of quality of

life. It was chosen because it has been used and validated with chronic illness populations and

because it is easy to administer and is brief. The QOLS is in the public domain, so no permission

to use the instrument is required.

Cantril's Self-Anchoring Striving Scale

In this study both quality of life and meaningful function were assessed using Cantril's

Self-Anchoring Striving Scale (SASS) (Appendix G and H). Each subj ect completed a separate

scale for quality of life and one for meaningful function. The SASS was originally developed for

use in a multi-national, multi-cultural study to assess a person' s general sense of well-being at

three points in time: past, present, and future. The scale was based on the premise that each

individual's expression of concerns, values and life perception can be used to establish top and

bottom points of a self-defined measurement continuum. Cantril (1965) noted that it is

particularly adaptable for studying highly subjective concepts.

The SASS consists of a representation of a 10-step ladder with the top and bottom rungs

of the ladder representing each extreme of the construct being measured. Self-anchoring refers

to the methodology of asking the person to define/describe each end of the continuum. Thus, the

scale results in both numerical and narrative data. The scale has been used to measure quality of









life of individuals undergoing hemodyalisis, individuals with coronary artery disease, with

COPD, and with seizure disorder (Hartshorn & Byers, 1994; Hoothay, DeStefano, Leary, &

Foley-Hartel, 1990). Carpenter (1996) adapted the methodology and scale to study self-esteem.

Reliability

Because the endpoints of the scale are identified by each subj ect, the numerical ratings

reflect individual criteria. Therefore, a rating by one person is not the same as a rating by another

person. In other words, a rating of seven for one person does not necessarily mean the same

thing as a rating of seven from another. For this reason, traditional definitions of reliability can

not be applied to this scale (Cantril, 1965). Stability of the scale has been supported by test-

retest reliability coefficients ranging from 0.65 of a 2 year period to 0.92 over a 2 week period

(Cohen, 1988; Carpenter, 1996).

Validity

In a study of self esteem, convergent construct validity was supported by a correlation

between the Rosenberg Self-Esteem Scale and the SASS ranging from 0.58 and 0.65 from a

group of graduate students to 0.75 from a group of women with breast cancer. Also, a correlation

was found between the SASS and Ryff s Self-Acceptance Scale 0.64 in a group of women with

breast cancer and 0.76 in a group of age-matched healthy women. The SASS was also

comparable to the Rosenberg Self-Esteem Scale in differentiating between individuals with high

esteem versus low esteem (Carpenter, 1994) The SASS was chosen for use in this study because

of its ability to reflect the subj ective and multidimensional nature of the constructs quality of life

and meaningful function. By allowing the subject to define the scale's anchors on an individual

basis, there is an improved opportunity for understanding the meaning of the numerical rating.

The SASS is in the public domain, so no permission to use the instrument is required.









Center for Epidemiological Studies-Depression Scale

Depression is a factor that was included in this study because it has been consistently

associated with variations in quality of life. The Center for Epidemiological Studies-Depression

scale (CES-D) was used to assess depression (Appendix I). This instrument is a twenty-item

scale that measures the presence and severity of symptoms of depression over the past seven

days, focusing primarily on cognitive and affective symptoms (Radloff & Locke, 1986).

Respondents are asked to rate the frequency of experiencing a symptom during the past week.

Response categories range from zero (symptoms occur rarely) to three (symptoms have occurred

from 5 to 7 days in the past week), thus weighting the response based on the number of times the

symptom occurred in the past week. Instrument scores range from zero to sixty. A score of

greater than 16 is indicative of depression (Radloff, 1977). Increased severity of depression is

indicated by higher scores (Radloff, 1977). The following ranges will be used: (a) 0 to 15= not

depressed, (b) 16 to 20 = mildly depressed, (c) 21- 30 = moderately depressed, (d) 31-60 =

severely depressed. The CES-D can be administered in either a self-report or interview format.

The instrument can be completed in approximately five to ten minutes. In this study, the CES-D

was completed using an interview format.

Reliability

The CES-D has demonstrated good reliability in terms of internal consistency. Radloff

(1977) reported a Chronbach' s alpha .90 for adults with a psychiatric diagnosis and .87 for adults

without a psychiatric diagnosis. In addition, using Spearman Brown techniques, reliability

coefficients of.92 for adults with a psychiatric diagnosis and .87 for adults without a psychiatric

diagnosis were found. Test-retest correlations have been lower (.45 to .70), as would be

expected since this instrument measures current depression (Radloff, 1977).









Validity

The CES-D has demonstrated criterion-related validity in several studies. In a study of

487 community-based subj ects aged 55 to 85 years the CES-D was able to identify individuals

who had been previously diagnosed with depression using the Diagnostic Interview Scale. The

CES-D demonstrated a weighted sensitivity of 100% and specifieity of 88% ( Beekman, Deeg,

Van Limbeek, Braam, De Vries, & Van Tilburg, 1997). Using the Structured Clinical Interview

for the Diagnostic and Statistical Manual of Mental Disorders as the diagnostic criterion, the

CES-D demonstrated a sensitivity of 92% and a specifieity of 87% in a population of 130

patients aged 60 years or older (Lyness, Noel, Cox, King, Conwell, & Caine, 1997). Parikh,

Eden, Price, & Robinson (1988), using a standardized interview for affective, cognitive, physical

and social functioning as the criterion in a sample of 80 stroke survivors, found that the CES-D

had a specifieity of 90% and a sensitivity of 86%. In addition, convergent construct validity has

been supported by a correlation of .81 between the CES-D and the Beck Depression Inventory-

Short Form in a population of French adults (Cathbras, Mosnier, Levy Bouchou, and Rousset,

1994). Shinar et al. (1986), while studying stroke patients, reported correlations of .57 and .82

when comparing the CES-D with a psychiatric battery of unspecified tests for depression.

The CES-D was chosen for this study because it (a) has been tested with community

samples of older adults ( Beekman, Deeg, VanLimbeek, Braam, De Vries, & Van Tilburg, 1997;

Lewinsohn, Seeley, Roberts, & Allen, 1997; Lyness, Noel, Cox, King, Conwell, & Cain, 1997);

(b) has been used in several studies of stroke survivors; and (c) is brief and easy to administer.

The CES-D is in the public domain, so no permission to use the instrument is required.

Perceived Social Support From Family and Friends

Social support was measured using the Perceived Social Support From Family (PSS-FA)

and Friends (PSS-FR) (0 Appendix J). This scale was designed to measure the extent to which









an individual perceives that his/her needs for support, information, and feedback are fulfilled by

friends and family. This instrument consists of two subscales, each containing twenty items. The

PSS-FA subscale measures perceived support from family, while the PSS-FR measures

perceived support from friends. The instrument uses a "yes", "no", "don't know" format. The

scores for each subscale ranges from 0 to 20, with higher scores indicating higher levels of

perceived support. A separate score for each subscale is obtained (Lyons, Parrotta, & Hancher-

Kvom, 1988; Procidano & Heller, 1983). The instrument can be self-administered or

administered using an interview format and takes approximately 10 minutes to complete. In this

study, the instrument was administered using an interview format.

Reliability

The PSS-FA and PSS-FR are reliable measures. In a sample of college undergraduates

(n=222) a Chronbach's alpha of .90 for the PSS-FA and .88 for the PSS-FR were obtained. In

addition test-retest reliability coefficient was .83 over a one month interval (Procidano & Heller,

1983). In samples of chronic psychiatric patients (n=74), diabetic patients (n=53), and college

undergraduates (n=92), Chronbach's alpha ranged from .89 to .92 for the PSS-FA and .84 to .92

for the PSS-FR (Lyons, Parrotta, & Hancher-Kvom, 1988).

Validity

Procidano and Heller (1983) conducted construct validation studies for the PSS-FA and

PSS-FR with samples of college students. They found the tool to be related to a range of

psychopathology and social traits.

1. A group of subj ects (n=66) completed the PSS-FA and PSS-FR in addition to the Life

Experience Survey, the Social Network Questionnaire, and the Langner symptom screening

instrument. The Life Experience Survey was not related to either the PSS-FA or PSS-FR. Scores

on the PSS-FA and PSS-FR had a low negative correlation of -.29 and -.27, respectively, with










Langner symptom scores, indicating that those with higher symptom scores had lower perceived

social support. Some social network variables were related to perceived social support. The

length of time a person has known members of the network showed a low negative correlation

with PSS-FR of -.28. reciprocity in providing tangible support plus the length of time of knowing

a person in the network was the best predictor of the PSS-FR score (R=.33). The best predictor

of the PSS-FA score were intangible support plus the tangible support scores (R= .43).

2. A second group of college students (n=63) completed three scales of the California

Psychological Inventory: the good impression scale, sociability scale, and the social presence

scale. In addition, social competence was assessed using the Dating Assertion Questionnaire and

dependence was measured using the Interpersonal Dependency scale. Low correlations were

found between the PSS-FR and the good impression subscale (r=.23) and the sociability subscale

(r-.33). A moderate correlation of .51 was found between the PSS-FA and the social presence

sub scale. There was no relationship between the PSS-FA and these measures. A low to moderate

correlation was found between the Dating Assertion Questionnaire and the PSS-FR and PSS-FA

(r-.40 and .35, respectively). A moderate negative correlation was found between the

Interpersonal Dependency Scale and the PSS-FR(r--.43).

3. A third group of college students (n=80) completed the short form lVMVPI and the

Marlowe-Crowne Social Desirability scale. The PSS-FR showed no significant correlation with

the short form IV1VPI or with the Social Desirability. However, there was a low negative

correlation between the PSS-FR and two sub scales of the short form lVMVPI, the psychasthenia

scale (r= -.23) and the schizophrenia scale (r= -.20). There was a low positive correlation

between the PSS-FA and the short form IV1VPI (r- .20), the Social Desirability Scale (r= .29).

There was also moderate positive correlations between the PSS-FA and three subscales of the









short form MMPI, the depression scale (r= .43), the psychasthenia scale (r- .33), and the

schizophrenia scale (r= .33).

Lyons et al. (1988) performed additional validity studies with the PSS-FA and PSS-FR

with a group of chronic psychiatric patients (n=74), a group of diabetic patients (n=53), and a

group of college students (n=92). There was a moderate correlation of .40 between the PSS-FA

and the PSS-FR for the combined group (n=219) of. The correlation remained moderate within

the chronic psychiatric patient group (r=.40) and in the college student group (r=.42). The

correlation fell to .18 for the diabetic patient group. When comparing the scores among the

groups, there were significantly higher levels of perceived family support (PSS-FA) for the

diabetic and college groups compared with the chronic psychiatric patients. There was no

difference between the PSS-FA score means between the college student group and the diabetic

group. There was a significant difference in the perceived social support from friends (PSS-FR)

in the college group as compared with the chronic psychiatric patients.

The low to moderate correlations obtained in these validity studies indicate that the PSS-

FA and PSS-FR measure related but separate constructs and does lend support to construct

validity of the scale. Perceived social support from family and from friends is related to certain

social network characteristics, in addition to some personality traits and may be influenced by

mood states and illness.

The PSS-FA/FR is in the public domain, thus permission to use the instrument is not

required. The PSS-FA/FR was chosen for this study because it has been used in studies of

populations with chronic illness and is brief.

Data Analysis

Descriptive statistics, including frequencies, ranges, and means were used to summarize

all data. Correlational analysis was explored among the variables measuring quality of life










(QOLS and SASS/QOL), functional ability (BI and MMSE), meaningful function (SASS/MF),

depression (CES-D), social support (PSS/FR and PSS/FA), and moths post stroke. Data

categories for the variables "post-stroke deficits" and "co-existing health problems" were

combined to maximize representation of each category in the data analysis. Data for "post-stroke

deficits" were combined and coded as to the presence or absence of a motor deficit, aphasia, and

perceptual/cognitive deficits. Data for co-existing health problems were combined and coded as

to the presence or absence of cardiovascular disease, respiratory disease, and musculoskeletal

disease, and visual changes. To further explore relationships of the variables, multiple regression

analysis was performed using the general linear model.

The descriptive data were analyzed using a word content analysis procedure that uses

standard word processing programs or other readily available software to generate word lists

from descriptive text data, such as interview data (Ryan and Weisner, 1998). The word lists are

then examined for patterns and are helpful in identifying the relative importance of a word or

concept based on the number of times it appears in the text. This method has been used to

identify patterns in bodies of text and to identify probable conceptually important concepts in

text without relying on predetermined categories or theory to analyze the data. However, word

analysis does not produce a holistic interpretation of descriptive data because the words are taken

out of context; thus, the meaning underlying the text is lost. Because of this, word analysis is

often used an initial step in descriptive data analysis or in conjunction with ethnographic or other

sources of data. In this case, the word analysis is being combined with statistical analysis

obtained from the previously described instruments.


Descriptive data were collected when completing the SASS/MF and SASS/QOL. These

data were audio-taped; the interviews transcribed verbatim. All audiotapes were transcribed









verbatim using the word processing program (Microsoft) Word. A separate folder was created

for each subj ect. The portion of the transcript for each subj ect that resulted from answering the

questions on quality of life was copied and pasted into a separate Eile and named "Subj ect X

QOL TEXT". From this text any text spoken by the investigator was deleted. This Eile was

placed in the corresponding subj ect' s folder. This procedure was repeated for the portion of the

transcript for each subj ect that resulted from answering the questions on meaningful function and

named Subj ect X MF TEXT". The program "Word Counter for Microsoft Word 2. 17" was used

to obtain a total word count for the "QOL TEXT". The program also identified all unique, (i.e.,

different) word forms and the frequencies of each unique word form for the "QOL TEXT",

presenting the word count frequency report in descending rank order.. The results were saved

into a fie named "Subj ect X QOL WORD COUNT" and were placed in the corresponding

subj ect' s Eile. This procedure was repeated for the "MF TEXT".

Data were analyzed by quality of life and meaningful function for all subj ects, by age

group, and by months post CVA. For each data analysis category the appropriate subj ects for

each category were identified. The "QOL TEXT" fie for each identified subj ect was copied and

pasted into a new fie that contained the Hiles from all the identified subj ects. A word count with

word frequency was performed for each new data analysis category. In an attempt to limit the

number of terms used in the analysis, all unique terms occurring two or fewer times were deleted

from each file. On examining the remaining terms, there were a large volume of words which,

taken out of context and in isolation, had little meaning. It was felt that including these in the

analysis would not provide much insight into the research questions. The maj ority of these words

were identified on a list of most commonly used English words. The first 100 of the most

commonly used English words account for one half of all material printed in English (Fry, Kress,









& Fountoukidis, 2000). In order to remove the most words that were not beneficial to the

analysis, the 125 most commonly occurring used English words were deleted from the analysis.

Occurrences of different word forms for the same word, such as pleural or past-tense forms, were

combined in the word count and the rank for the word adjusted accordingly. This procedure was

repeated with the "MF TEXT" file. The data analysis was performed from this Eile.











Table 3-1 Selected demographic characteristics of the sample of stroke survivors
Characteri sti cs Number Percent
Sex
Male 40 57.14
Female 30 42.86
Race
White/Caucasian 61 87.14
African American 6 8.47
Native American 3 4.29
Age
40 49 yrs 6 8.57
50 59 yrs 17 24.29
60 69 yrs 27 38.56
70 79 yrs 17 24.29
80 85 yrs 3 4.29
Marital Status
Single (never married) 8 11.42
Married 43 61.43
Divorced 13 18.57
Widowed 6 8.57
Number of children
None 8 11.43
1 16 22.86
2 20 28.57
3 13 18.57
4 13 18.57
Living arrangements
Lives alone 16 22.86
Lives with spouse 44 62.86
Lives with child 8 11.43
Lives with other family member 1 1.43
Lives with hired care taker 1 1.43
Spouse's health
Not applicable 26 37.14
Well 35 50
Significant illness 9 12.86











Table 3-1 Continued
Characteri sti c Number Percent
Occupation
Unemployed 60 85.71
Employed full time in same occupation as prior
to stroke 6 8.57
Employed full time in different occupation 1 1.43
Employed part time in same occupation as 0 0.0
prior to stroke
Employed part time in different occupation 3 4.29
Income
under $10,000 per yr 10 14.29
$10,000 to $20,000 per yr 14 20.00
$21,000 to $30,000 per yr 18 25.71
$31,000 to $40,000 per yr 20 28.57
$41,000 to $50,000 per yr 4 5.71
$51,000 to $60,000 per yr 1 1.43
$61,000 to $70,000 per yr 2 2.86
$141,000 to $150,000 per yr 1 1.43
Education
9-11 yrs 5 7.14
12 yrs 34 48.57
13-15 yrs 17 24.29
16 yrs 13 18.57
16+ yrs 1 1.43
Months since stroke
3-12 months 21 30.00
13-24 months 11 15.71
25-36 months 10 14.29
37-48 months 15 21.43
49-60 months 13 18.57












Table 3-2 Sample's post stroke deficits
Defieit Number Percent
Hemiplegia/Hemiparesis 67 95.71
Right 43 61.43
Hemiparesis 37 52.86
Hemiplegia 6 8.57
Left 24 34.29

Hemiparesis 15 21.53
Hemiplegia 9 12.86
Aphasia 35 50.00
Expressive 27 38.57
Receptive 11.43
Visual loss/changes 14 20.00
Cognitive deficits 22 31.43
Other 1 1.42



Table 3-3 Sample's co-existing health problems
Health problem Number Percent
None 25 35.71
Cardiovascular
Not present 51 72.86
Present 19 27.14
Respiratory
Not present 62 88.57
Present 8 11.43
Musculoskeletal
Not present 48 68.57
Present 22 31.43
Visual loss/changes (not 14 20.00
related to stroke)
Not present 53 75.71
Present 17 24.29









CHAPTER 4
RESULTS

Introduction

This was a descriptive correlational study designed to advance the understanding the

concept of quality of life in stroke survivors by exploring the relationships of functional ability,

meaningful function, and other selected variables as described by Day and Jankey's (1996)

model of the evaluation process of quality of life. This model describes the process that an

individual uses to evaluate one' s quality of life and takes into consideration life circumstances,

personality, and individual's goal and achievements, as well as the external reactions of the

environment. The specific questions addressed by this research are: (a) are there relationships

among quality of life, meaningful functioning, functional ability, depression, social support; (b)

what terms do stroke survivors use to describe quality of life; (c) what terms do stroke survivors

use to describe meaningful function; and (d) to what extent do the variables meaningful

functioning, functional ability, depression, social support, age and length of time since stroke

predict quality of life in stroke survivors? Because the variables depression and social support

have consistently been correlated with quality of life of stroke survivors, these variables were

included in the study so their influence could be taken into consideration.

This chapter is divided into three sections. First, descriptive data from the instruments

measuring quality of life, functional ability, meaningful function, depression and social support

are presented. Descriptive data pertaining to sample description were presented in Chapter 3.

The second section explores the relationships among the variables and addresses the first and

fourth study questions. Correlations between variables are discussed, as well as the results of

multiple regression analysis. The third section addresses the second and third study questions and









involves an analysis of descriptive interview data. An analysis was performed of the words used

by the subj ects in discussing quality of life and meaningful function.

Descriptive Statistics

Complete data were available for 70 subj ects. Table 4-1 presents the range, means, and

standard deviation for the variables quality of life as measured by the QOLS, quality of life as

measured by the SASS/QOL, meaningful function (SASS/MF), functional ability (BI and

MMSE), depression (CES-D), social support (PSS/FA and PSS/FR), number of months since

stroke and age. Table 4-2 presents the frequency distribution of these variables.


Quality of Life


Though the mean for the variable QOLS is 72.16, the frequency distribution demonstrates

that 58.57% of the sample rated quality of life between 70 and 99. Similarly, the mean for the

SASS/QOL is 7.29 but 64.28% of the sample rated quality of life above 7 out of 10.

Meaningful Function

The mean for the variable SASS/MF was 6.5 (out of a possible 10). More than half the

subj ects (57. 15%) rated their level of meaningful function as 6 out of 10 or less. Physical

functioning as measured by the BI had a mean of 90.71 (out of a possible 100). The frequency

distribution indicates that 55.71% of the sample had a BI of 100 and 80% of the sample' s BI

score was 90 or above. Cognitive functioning as measured by the MMSE had a mean of 27. 1

(out of a possible 30) and 92.86% of the sample scored in the "no impairment" category.

Depression

The variable depression was measured using the CES-D, which had a mean of 11.74.

Fifty-one subj ects (72.86%) scored from 0 to 15, which is in the "not depressed" category.









Conversely, 27. 14% of the subj ects scored greater than 16, indicating the presence of depression.

Eighteen percent scored in the moderately to severely depressed range.

Social Support

The variable social support was measured using the PSS/FA (Perceived Social Support

from Family) and the PSS/FR (Perceived Social Support from Friends). The mean scores were

13.73 and 14.56 respectively. However, over half the subj ects rated their PSS/FA and PSS/FR

(55.71% and 65.71%, respectively) from 15 to 20, out of a possible score of 20.

Months Since CVA and Age

The descriptive data for the variables M/CVA and age were discussed in chapter 3 and

will not be repeated here.

Examination of Relationships of the Variables

Question 1

Question 1 explores the relationship of quality of life and the independent variables

meaningful functioning, functional ability, depression, social support, age, and length of time

since stoke. Correlations among all variables were determined. In addition, the data were also

examined for correlations between quality of life, income, education, and number of children.

These data are presented in Table 4-3.

The dependent variable, quality of life was measured using a domain specific instrument,

the QOLS as well as a global measure, the SASS/QOL. The QOLS and the SASS/QOL had a

significant, moderate, positive correlation (r = .59). The independent variables physical

functioning (BI), meaningful function (SASS/MF), months since CVA (M/CVA) and social

support from friends (PSS/FA) were significantly positively correlated with quality of life as









measured by both instruments. The BI showed a moderate correlation (r= .52) with the

SASS/QOL. Otherwise, the BI had a weak correlation with the QOLS (r=.23), the MMSE

(r-.12), M/CVA (r-.24), and PSS/FA (r-.26). Meaningful function was significantly correlated

with all other variables except months since CVA. In particular, meaningful function had strong

correlation with quality of life as measured by the SASS/QOL (r = .67), a moderate correlation

with the QOLS (r = .53), and a weak correlation with the BI (r = .22). There was a significant

moderate negative correlation between depression and quality of life as measured by both

instruments, and meaningful function (r = .29 to .37); where as social support from both friends

and family and age were weakly, negatively correlated with the CESD (r= .07 to .11).

Depression was not correlated with months since CVA or with cognitive functioning. Age did

not significantly correlate with any variable other than depression.


Question 4

Question 4 explores which independent variables (meaningful function, functional

ability, depression, social support, and length of time since stroke) or combination of variables

predicts the outcome variable, level of quality of life. Multiple regression was conducted to

explore this relationship. The bivariate relationships were examined for evidence of

multicollinearity .

A simultaneous multiple regression analysis of all independent variables was employed

to predict quality of life. This included meaningful function (SASS/MF/NOW), functional

ability (BI, MMSE), depression (CESD), social support (PSS/FA, PSS/FR), months since stroke

(MCVA), and age. Initially, the measure for quality of life used in the model was the QOLS.

Data were analyzed using Type III sums of squares. The results of this analysis are presented in

Table 4-4. The overall model is statistically significant (F=35.35, p= <.0001). This total model












explained 75.32% of the variance in quality of life. The SASS/MF/NOW is positively associated

with the QOLS when adjusting for the other variables in the model. The PSSFR and CESD are

negatively associated with Quality Of Life when adjusting for all the other variables in the

model .


The model was then run again using the global measure of quality of life, the

SASS/QOL, as the measure of quality of life. This overall model was also statistically

significant (F=23.27, p= <.0001). This total model explained 75.32% of the variance in quality of

life. However, the relationships of the variables differed considerably. The SASS/MF/NOW was

positively associated with the SASS/QOL when adjusting for the other variables in the model.

The SASS/MF was also positively associated with the length of time post stroke (MCVA) and

depression (CESD) and social support (PSS/FA and PSS/FR) were not significantly associated

with the SASS/QOL. These data are presented in Table 4-5.

Table 4-6 summarizes the findings of the 2 multiple regression models. Depression

(CESD) was negatively associated with quality of life as measured by the QOLS but no

association was found between depression and the SASS/QOL. When quality of life was

measured by the QOLS, social support provided by friends (PSS/FR) was negatively associated

with quality of life and social support provided by family (PSS/FA) was not associated with

quality of life at all. Neither dimension of social support (PSS/FA and PSS/FR) was significantly

associated with quality of life as measured by the SASS/QOL. None of the variables social

support provided by family (PSS/FA), physical functional ability (BI), cognitive functional

ability (MMSE), length of time since stroke (MCVA), and age was significantly associated with

the QOLS. Only the length of time post stroke was significantly associated with the SASS/QOL.









Descriptive Interview Data Analysis


Question 2

Question 2 explores the concept of quality of life by examining the terms subj ects use to

describe quality of life. Descriptive data were obtained using the Self-Anchoring Striving Scale

for Quality of Life (SASS/QOL). In order to strengthen the measure of quality of life, two

different instruments were used to measure quality of life. The QOLS provided a domain specific

measure of the concept. The SASS/QOL was used to provide a global measure of quality of life.

The descriptive data obtained in completing this instrument provides insight into the thought

process behind the subj ect' s process of evaluating quality of life.

The following question was asked: All of us want certain things out of life. Thinking

about what really matters in your own life, if you imagine your life in the best possible light,

what would your life look like? Permissible probes included: what are your hopes for the future;

what would your life have to be like for you to be completely happy; what is missing for you to

be happy? Following this, the subj ect was asked: now taking the other side of the picture, if you

imagine your future in the worst possible light, what would your life look like then? Permissible

probe was: what would make you unhappy? A word analysis was then performed.

Question 3

Question 3 explores the concept of meaningful function by examining the terms subj ects

use to describe high and low meaningful function. Descriptive data were obtained using the Self-

Anchoring Striving Scale for Meaningful Function (SASS/MF).


The following question was asked: Thinking about what really matters in your own life,

what are the five most meaningful or important activities in your life? If you imagine your life in

the best possible light, what activities would you be doing? Permissible probes were: what









activities would have to be in your life for you to be completely happy: what activities are

missing for you to be happy? Following this, the subj ect was asked: now, taking the other side of

the picture, if you imagine your future in the worst possible light, what would your life look like

then? A word analysis was then performed on the data.

Text Analysis All Subjects

In comparing words in discussing quality of life and meaningful functioning,

approximately 19% more total words and 6% more unique words were used in discussing quality

of life. More than twice as many words were used only once in discussion of quality of life,

suggesting that there was a greater diversity of concepts included in the discussion of quality of

life than meaningful function.

Top Five Terms

"Life" appears in both texts. In the quality of life text it is the most commonly occurring

term, occurring 145 times, and is the 18th most commonly occurring term in the meaningful

function text, occurring 25 times. "Stroke" is the 2nd most commonly occurring term in quality of

life text and the 3rd most common in the meaningful function text. It is used twice as often in

discussing quality of life as compared to the meaningful function text. "Friends" is 3rd most

common term used in the quality of life text, 13th most common in the meaningful function text

and is used more than twice as often in the quality of life text.

The word "able" appears prominently in both quality of life and meaningful function

texts. In the meaningful function text, it is the most commonly used term, occurring 92 times.

"Able" occurs 69 times in the quality of life text, where it is the 4th most commonly occurring

term. Other terms appearing in the texts that refer to being able are "independent",

"independence", "dependent", "depend", "ability", "control", and "normal".









"Independence"/"dependence" occur approximately equally in quality of life and meaningful

function texts, 18 and 19 times respectively. "Ability" occurs four times in the meaningful

function text only and "control" occurs 12 times in the quality of life text and 4 times in the

meaningful function text. The overall indication is that terms referencing or related to the

concept of "being able" occur approximately equally in both the quality of life text and the

meaningful function text (99 and 119 respectively).

Relationship Oriented Nouns

Table 4-7 shows the terms used in each text which would pertain to relationships and their

frequencies. The quality of life text contained 38 unique terms for a total of 408 words and the

meaningful function text contained 20 unique terms for a total of 136 words. Eleven terms were

common to both texts: "friends", "family", "wife", "kids"/"children", "husband", "daughter",

"grandchildren"/"kids", "God", "church", "dad"/"father", and "dog". These occurred 311 times

in the quality of life text and 126 times in the meaningful function text." God" was also

referenced in both texts, though only 3 times in the meaningful function text versus 16 references

in the quality of life text. In addition, the quality of life text contained 33 total references to faith,

where as the meaningful function text contained no additional references to faith. The quality of

life text contained references to additional family members including "son", "mother", "parents",

and "sister". "Neighbors" only occurred in the quality of life text.

Verb Usage

Table 4-8 shows the verbs used in each text and their frequencies. Forty-seven unique

verbs were used in discussing both meaningful function and quality of life. In addition, the total

number of these verbs used in each text was fairly equal, with 901 total verbs being used in the

meaningful function text and 912 being used in the quality of life text. Four of the five most










commonly occurring verbs in each text are the same, though the frequencies are different.

"Work" occurs with the highest frequency (57 occurrences) in the meaningful function text. It

occurs with the same frequency in the quality of life text, but it ranks as the fourth most

commonly occurring verb. "Know" is the verb that occurs with the highest frequency in the

quality of life text, occurring 74 times. It is the 5th most commonly occurring verb in the

meaningful function text, occurring 37 times. "Want" is the second most commonly occurring

verb in both texts, occurring 53 times in the meaningful function text and 63 times in the quality

of life text. "Care" is the 4th most frequently occurring verb in the meaningful function text,

occurring 38 times and the 5th most frequently occurring verb in the quality of life text, occurring

41 times. Though similarities are seen in this comparison, there is a general trend toward

physical activity in the meaningful function text.

Verbs occurring in both texts

Among the verbs used in both texts, 24 verbs associated with specific activities, totaling

315 words, were used in the meaningful function text. These verbs were "drive", "walk", "talk",

"read", "cook", "golf", "write", "eat" "ac""eecs,"fh,"rntavlsi,"laugh",

"feed", "shopping", "bowling", "cut", "tell", "drink", "hike", "mow", and "sew". Nine such

verbs, totaling 59 words, were used in the quality of life text. These included "walk", "eat",

"read", "sit", "golf", "drive", "travel", and "run". Here it is clearly seen that the meaningful

function text was characterized by verbs denoting specific

activities. Though some of these verbs occurred in the quality of life text, the frequency was

much lower.

Seventeen verbs associated with mental activity or emotions, totaling 253 words, were

used in the quality of life text. Twelve of these verbs were also used in the meaningful function

text, totaling 163 words. These verbs included "care", "need", "hope", "love", "feel", "support",










"worry", "imagine", "guess", "miss", "enjoy", "believe", "wish", "deal", "remembered", and

"scares". Here, it is seen that the quality of life text is characterized by verbs associated with

mental activities or emotions. Though these verbs also appeared in the meaningful function text,

they occurred approximately half as frequently.

Table 4-9 shows the verbs occurring in either meaningful function or quality of life texts.

There were 22 unique verbs, totaling 163 words, used in discussing meaningful function that

were not used in discussing quality of life. Conversely, 13 unique verbs, totaling 82 words, were

used in discussing quality of life but were not used in discussing meaningful function. In general,

the verbs unique to the meaningful function text are associated with specific functions or

activities. The verbs unique to the quality of life text are less specific and less active or more

associated with mental activities or emotions.

Comparison of Text Across Age Groups

The subj ect population was broken down into age ranges 40 to 49 years, 50 to 59 years, 60

to 69 years, 70 to 79 years, and 80 to 85 years. The "meaningful function word count file" and

the "quality of life word count file" for each subject was copied and pasted into the appropriate

separate file for meaningful function and quality of life by each age range. All unique terms

occurring two or fewer times were deleted from each file. The 125 most commonly used English

words were also deleted. Occurrences of different word forms for the same word in the word

count and the rank adjusted accordingly. Table 4-10 presents the distribution by age group of

terms used in discussing meaningful function and quality of life. Table 4-11 presents the

percentage for each age group of unique words obtained from the total number of words used in

discussing meaningful function and quality of life.









Meaningful Function

Ninety-one percent of the unique terms are found in the age range 50 to 79 years of age,

representing 94% of the total number of words. This is not surprising as 87% of the study

population is comprised of this age range. The largest population age group was the 60 to 69 year

age group, totaling 27 persons and comprising 39% of the sample population. The text from this

age group also contained the largest number of unique and total words used in discussing

meaningful function, 165 and 1069 respectively, representing 48% of the total number of unique

words and 54% of the total of all words.

The most interesting finding is that the terms found in the 40 to 49 years and the 80 to 85

years age groups were not characteristic of those found in the remainder of the study sample.

Both age groups had significantly fewer terms after deletion of common words. The verbs used

by the 40 to 49 year age group were not characteristically those denoting specific activities. In

the 40 to 49 year age group 25 1 terms out of the total of 33 1 unique words were used two or

fewer times so were not considered in the analysis. Similarly, in the 80 to 85 year age group 229

terms out of the total of 290 unique words were used two or fewer times. When comparing the

percentage of unique terms obtained from the total number of words in the text utilized in the

analysis, 25% of the terms used by the 40 to 49 year age group were unique terms compared to

were combined the 17% used by all subj ects (Table 14). Thirty-one percent of the terms used by

the 80 to 85 year age group were unique. This indicates that more terms were used but were not

repeated as they were in the other age groups.

"Able" remains the most commonly occurring term when discussing meaningful function

in all age groups except the group of 80-85 year olds, where it doesn't even appear. Interestingly,

though "work" was the most commonly occurring verb among all subj ects when discussing

meaningful function, it does not hold that rank when the data are broken down into age groups.









"Work" is not referenced in the 40 to 49 years of age group, which is unusual since this group is

well within working age. The study population had 6 subjects in this group, 5 of which were

female and none of which were working following the stroke. Sixty-seven percent of the

references to "work" occur in the 50 to 69 years age range.

While "want" was the second most commonly occurring verb among all subj ects when

discussing both meaningful function and quality of life, it holds this rank only in the 60 to 69

year age group. However, this represents 5 1% of the occurrences of the term.

Table 4-12 presents a comparison of verb usage when discussing meaningful function

among the age groups. Only the 10 most commonly occurring verbs were used in the

comparison. Because the 40-49 year and the 80 to 85 year age groups had fewer than 10 verbs,

all of the verbs occurring in these groups were used. The verbs contained in the "all subj ects"

category are fairly evenly distributed across all the age groups with the exception of the 80 to 85

year age group. The 40 to 49 year age group used the fewest number of verbs that were also

contained in the "all subj ects" group, but four of the five total verbs were contained from that

group. In the 80 to 85 year age group, the only verb on the list is "help". The other two verbs,

"golf' and "speak" are not unique to this age group, but they do not appear in the top ten most

commonly used verbs.

Table 4-13 presents a comparison of noun usage when discussing quality of life among the

age groups. Again, only the 10 most commonly occurring nouns were used in the comparison.

Because the 40-49 year and the 80 to 85 year age groups had fewer than 10 verbs, all of the verbs

occurring in these groups were used. It is interesting to note that the 10 most commonly

occurring nouns in the group "all subj ects" was fairly evenly divided between nouns denoting

people and nouns denoting obj ects. However, the 10 most common nouns in all age groups










except the 40 to 49 year age group were predominantly obj ects. "Wheelchair", "arm" and "hand"

were referenced several times, as was "stroke". These nouns are suggestive of activity rather than

relationship.

Quality of Life

Similar to what was found with the meaningful function text analysis, 92% of the unique

terms are found in the age range 50 to 79 years of age, representing 95% of the total number of

words. The text from 60 to 69 year age group again contained the largest number of unique and

total words used in discussing quality of life, 182 and 1263 respectively, representing 43% of the

total number of unique words and 46% of the total of all words.

Again, 27% of the terms used by the 40 to 49 year age group were unique as compared to

the 16% used by all subjects (Table 14). Twenty-one percent of the terms used by the 80 to 85

year age group were umique.

"Life" was referenced most frequently in the analysis by all subj ects. When broken down

by age groups, "life" does not appear in the list of terms for the 40 to 49 year or 50 to 59 year

groups. It is the most frequently occurring in the 60 to 69 year and 70 to 79 year group and is

second most common in the 80 to 85 year group.

Table 4-15 presents a comparison of verb usage in discussing quality of life among the age

groups. In the 60 to 69 and 70 to 79 year age groups, as well as the "all subj ect" group, only the

10 most commonly occurring verbs were used in the comparison. Because the other groups had

fewer than 10 verbs, all of the verbs occurring in these groups were used.

In general, the verbs used by the total group are also used in each age group. As seen in the

meaningful function analysis, the 40 to 49 year olds did not reference "work". The verbs used in

the 80 to 85 year old group were not unique to that group but they did not reference the verbs

most commonly used in the other groups. Of interest, "die" was referenced in the 70 to 79 year










age group. Again, the verbs appearing in the quality of life text are more associated with mental

activities or emotions and less so with specific activities. A notable exception is the reference to

golf in the 80 to 85 age group.

Table 4-16 presents a comparison of noun usage in discussing quality of life among the age

groups. The nouns among all groups are predominantly those denoting relationship, such as

friends, family, parents, and God. These are very different from the nouns used in discussing

meaningful function and are supportive of the findings in the analysis of all subj ects.










Table 4-1 Means of variables QOLS, SASS/QOL, SASS/MF, BI, MMSE, CES-D, PSS/FR,
PSS/FA, Months Since Stroke, Age
Variable Maximum Minimum Mean SD
QOLS 97 23 72.16 17.66
SASS/QOL 10 3 7.29 1.97
SASS/MF 10 3 6.5 2.02
BI 100 20 90.71 17.41
MMSE 30 14 27.1 3.17
CES-D 41 0 11.74 10.41
PSS/FA 20 0 13.73 6.09
PSS/FR 20 1 14.56 5.19
Months since stroke 55 3 28.67 17.33
Age 80 45 63.67 9.63
n=70










Table 4-2 Frequency distribution for variables QOLS, SASS/QOL, SASS/MF, BI, MMSE,
PSS/FR, PSS/FA, CES-D, Months Since Stroke, and Age.
Variable Number Percent


QOLS










SAS S/QOL


20-29
30-39
40-49
50-59
60-69
70-79
80-89
90-99


4.29
1.43
7.14
5.71
22.86
14.29
25.71
18.57

10.00
25.71
28.57
35.71

14.29
42.86
18.57
24.29

7.14
4.29
4.29
4.29
7.14
17.14
55.71

1.43
5.72
92.86


3-4/10
5-6/10
7-8/10
9-10/10

3-4/10
5-6/10
7-8/10
9-10/10

50 or less
70
75
80
90
95
100


SASS/MF


MMSE


0-17 (severe impairment)
18-23 (mild impairment)
24-30 (no impairment)