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Internal reliability and group differences on quality of life of developmentally handicapped and normal adolescents
Brown, Jocelyn Maree, Ph.D.
The Ohio State University, 1990
UMI 300 N. Zccb Rd. Ann Arbor, MI 48106
INTERNAL RELIABILITY AND GROUP DIFFERENCES
ON QUALITY OF LIFE
OF DEVELOPMENTAL!^ HANDICAPPED
AND NORMAL ADOLESCENTS
DISSERTATION
Presented in Partial Fulfillment of the Requirements for the Degree of Doctor of Philosophy in the Graduate School of the Ohio State University
By
Jocelyn Maree Brown, B.S., M.A.
The Ohio State University
1990
Dissertation Committee: Approved by:
J. Collins, Ph.D.
J. Genshaft, Ph.D. Jack A. t^aglieri, Ph.D. Adviser Collega/&f Education To My Parents
i i ACKNOWLEDGMENTS
My deepest appreciation goes out to my advisor, Dr. Jack Naglieri, for his guidance and expertise in the development and psychometric evaluation of my study. I am grateful to him for his willingness and enthusiasm to explore with me an exciting area of interest new to both of us. I would also like to thank my other dissertation committee members, Dr. Judy Genshaft and Dr. Jam es Collins, for their recommendations in the development of the Quality of Life Questionnaire, and for their participation in my preparation as a professional in the field of school psychology. I have dedicated this dissertation to my parents, Russ and Carleen Brown. Their unending love and support have given me the strength to pursue my goals. Their encouraging words have given me the will to persevere, and the desire to excel. VITA
November 1,1963 ...... Fremont, Ohio
June, 1985...... B.A., Wittenberg University Springfield, Ohio
1986-1987 ...... Graduate Research Assistant Great Lakes Area Regional Resource Center for Deaf- Blind Education Columbus, Ohio
1987-198 9...... Adult Basic Education Teacher Columbus Developmental Center Columbus, Ohio
1987-1988 ...... Graduate Research Assistant Graduate Studies Committee The Ohio State University, Columbus, Ohio
September, 1988...... M.A., The Ohio State University Columbus, Ohio
1988-198 9...... Graduate Research Assistant Council on Academic Excellence for Women The Ohio State University, Columbus, Ohio
1989-199 0...... School Psychology Intern South-Western City Schools Grove City, Ohio
i v 1990-Present Psychology Assistant Social Rehabilitation Services Columbus, Ohio
FIELDS OF STUDY
Major Field: Education
Studies in School Psychology, Psychological Assessment, Counseling, and Mental Retardation/Developmental Disabilities
v TABLE OF CONTENTS
DEDICATION...... ii
ACKNOWLEDGMENTS...... iii
VITA...... iv
LIST OF TABLES...... vii
LIST OF FIGURES...... viii
CHAPTERS PAGE
I. INTRODUCTION...... 1
II. REVIEW OF THE LITERATURE...... s...... 18
III. METHODOLOGY...... 47
IV. RESULTS...... 64
V. DISCUSSION...... 85
APPENDICES
A. Permission Letters...... 104
B. Quality of Life Questionnaire...... 107
C. Human Subject Review Committee Guidelines ...... 113
REFERENCES...... 115
v i LIST OF TABLES
TABLE PAGE
1. Characteristics of the Developmentally Handicapped Group by Age (in years) and Sex ...... 48
2. Characteristics of the Normal Group by Age (in years) and Sex ...... 49
3. Value Ratings for Subjective and Objective Responses ...... 57
4. Calculating Total Item Ratings...... 58
5. Level of Satisfaction According to Response Combinations 60
6. Spearman-Brown Correlation Coefficients...... 68
7. Analysis of Variance Results ...... 70
8. Gender Differences in Overall Quality of Life Rating...... 71
9. Factor Analysis for Normals...... 74
10. Item-Domain Correlations for Normals...... 76
11. Factor Analysis for Developmentally Handicapped...... 80
12. Item-Domain Total Correlations for Developmentally Handicapped...... 81 LIST OF FIGURES
RGURE PAGE
1. Spearman-Brown Correction Formula...... 61
2. Fisher’s Transformation to Z Formula...... 61
viii CHAPTER I INTRODUCTION
Schuessler and Fisher (1985) observe that, "concern about the good life is probably as old as civilization" (p. 46). Throughout history, man has searched for, and been driven by, the desire to experience a life filled with happiness and satisfaction. The factors that influence satisfaction, or well-being, involve an individual’s aspirations, standards of reference, and feeling state (Evans, Burns, Robinson, and Garrett, 1985). Edward C. Tolman, in his 1941 presidential address to Division Nine of the American Psychological Association, predicted a shift in what society currently values as the components of life that most accurately define well-being. Tolman envisioned a change in society from what he termed "economic man" to that of "psychological man". He anticipated a shift in the evaluation of life quality as currently measured by materialistic standards, to one that places greatest value on internal satisfaction. Quality of Life (QOL) is an ideal whose meaning continues to be redefined, and whose acquisition continues to be a life goal. The purpose of this study is to investigate the feasibility of developing a measure to define and measure QOL for normal and Developmentally Handicapped adolescents. Previous research on the
1 2 definition and measurement of QOL has mainly focussed on the development of QOL indexes for use with normal adult populations. The amount of research devoted to the investigation of QOL for the mentally retarded is extremely limited and has also been devoted to the study of an adult population. The research questions of this study address the ability of the QOL Questionnaire to adequately measure QOL for normal and Developmentally Handicapped adolescents and on its ability to identify any significant differences between the QOL ratings of these to groups.
DEFINING QOL Interest in the definition and evaluation of QOL began in the 1940's with the promotion of QOL research flourishing during the 1960’s (Schuessler and Fisher, 1985). The assessment of QOL is of interest to various scientific disciplines including economics, sociology, and psychology. Definitions of QOL are influenced by the focus of interest of each discipline. For example, the field of economics in defining QOL, focuses on the goodness of fit/social policy of the person and their environment (Schalock, Keith, Hoffman and Karan, 1989). QOL, from the perspective of sociology, however, is defined according to the influence of social indicators such as family life and education. Those in the field of psychology tend to focus QOL research on the influence of psychological indicators such as happiness and self-esteem when attempting to define QOL. 3
Throughout QOL literature, the terms well-being, happiness, and satisfaction are often used interchangeably when referring to the definition of life quality. Though each of these terms represents a similar concept, the definitions of these terms are actually quite different. Well-being refers to a broad evaluation involving the individual's perception of QOL, happiness and satisfaction, represent particular components that influence the definition of QOL. Cheng (1988) points out the differences that exist in the meaning of the terms happiness and satisfaction. "Happiness is merely an appraisal of emotional experience, whereas satisfaction involves the comparison of objective conditions to some internal standards" (p. 126). Diener, Emmons, Larsen and Griffin (1985) define QOL as a "judgment of how satisfied people are with their present state of affairs . . . based on a comparison with a standard which each individual sets for him or herself; it is not externally imposed" (p. 71). Personal characteristics such as age, sex, income, employment status, and interpersonal relations also influence the definition of QOL. A study by Campbell (1976) looked at the specific influence of age on QOL. Their results indicate that although satisfaction with life increases as one gets older, evaluations of happiness with life tends to decrease with increased age. This finding, according to Cheng (1988), is due to the fact that while older individuals are emotionally content, they experience greater dissatisfaction due to 4 declining status. Ackerman and Paolucci (1983) found a positive relationship between QOL and level of income. In studying the effects of income on QOL, Ackerman and Paolucci (1983) found that as satisfaction with income increases, QOL increases. In a study conducted by Rodgers (1977), investigating employment status, results indicated that women reported a higher evaluation of QOL if they continued employment even though they were not financially obligated to do so. Wilkening and McGranahan (1978) found that interpersonal relations had a greater influence on overall QOL than socio-economic status (SES) or social participation. Although variation exists in the broad definition of QOL as a result of a particular focus of interest, the definition of its components, that of quality, and of life, are more easily agreed upon. Quality is objectively defined. Quality is a measure along a continuum such as bad to good, rich to poor, or adequate to inadequate. The definition of life refers to specific aspects that involve physical and/or affective components of living. Life may be defined according to physical, or objective measures such as health, food, shelter, and income. Life also may be defined according to affective, or subjective measures, such as happiness or unhappiness (Franklin, Simmons, Solovitz, Clemons, and Miller, 1986), love and interpersonal relationships (Fletcher, 1979), and worth or value placed on life (Michalos, 1980). 5
Franklin, et al., (1986) emphasize that the definition of QOL depends upon the population studied. Most QOL studies have focused on defining well-being for special populations such as the mentally ill (Baker and Intagliata, 1982; and Lehman, Ward, and Linn, 1982), the terminally ill (Strauss, 1975; and Irwin, Gottleib, Kramer, & Danoff, 1982), and the aged (Cheng, 1988; Lawton, 1975; and Neugarten, Havighurst, and Tobin, 1961). Populations differ in the values placed on particular components of life according to those domains that most directly or greatly influence their life quality. Diener, et al., (1985) state that the definition of QOL is dependent upon the population studied as well as on the assessment instrument used. In Strauss's (1975) investigation of the QOL of individuals who suffer from chronic illness, it was found that the allocation and use of time is of greatest importance in defining QOL for individuals who are chronically ill. A study by Irwin, et al., (1982) evaluated the QOL for individuals with cancer and found that they share a definition of QOL very similar to individuals who are healthy. However, an important difference identified between these two groups focussed on the fact that cancer victims were much more satisfied with their life than were those whose health was in good condition. Michalos (1982) in studying QOL among the elderly, found that housing satisfaction contributes most to the definition of happiness. 6
QOL indexes have even been employed to make comparisons between the evaluation of QOL citizens of different countries. Michalos (1980) used various indicators to compare the QOL of representative samples of Canadian and American populations. Andrews and Inglehart (1979) investigated QOL differences in regard to personal and social satisfaction of citizens of eight western European countries and the United States. The influence of community satisfaction on QOL was compared between residents of Springfield, Illinois and Aix-en-Provence, France (Ostroot, Shin, & Snyder, 1982).
IDENTIFYING THE ROLE OF OBJECTIVE MEASURES IN QOL Campbell (1976) states that "QOL lies in the experience of life" (p.118). Objective measures identify the observable experiences of life that directly influence our evaluation of life satisfaction. Objective evaluations are based on cognitive, rather than affective interpretations of the individual. McKennell & Andrews (1983) specify the conceptual differences between cognition and affect. Cognition refers to "satisfaction judgments [which] are tied to the aspirations and standards of comparison in terms of which current circumstances are being evaluated" (p. 98). Affect, however, according to McKennel and Andrews (1983), refers to "the individual's immediate feeling state that is not anchored, or not tied to the same extent, to cognitive frames of reference" (p. 7
98). A study by McKennel (1978) indicates that cognitive measures are highly correlated to ratings of satisfaction with life, while affective measures are found to correlate with ratings of happiness with life.
OUTLINING THE ROLE OF SUBJECTIVE MEASURES IN QOL Objective, or cognitive measures alone, do not always provide a complete or valid representation of an individual's current satisfaction with life experiences. By including subjective measures in the evaluation of QOL, additional information can be provided to allow for a more comprehensive analysis of the well being of the individual. Campbell (1976) and Cheng (1988) both emphasize the value of including subjective measures in the identification of QOL. Andrews and Withey (1976) also identify advantages of employing subjective indicators of QOL and developed a QOL measure that specifically focuses on the subjective interpretation of life satisfaction. Other QOL research (Wilkening & McGranahan,1978; Amos, Hitt, & Warner, 1982; and Hill, Rotegard, and Bruininks, 1984) has also focussed on the examination of various subjective variables and their influence on QOL. For example, subjective measures of satisfaction with income in relation to their effect on an overall rating of QOL were analyzed by Ackerman & Paolucci (1983). Results of this study report that subjective indexes of income are more 8 accurate indicators of satisfaction than objective indexes of income. Similarly, Amos, et al., (1982) found that individuals living in areas of subaverage economic development rated life satisfaction more accurately based on subjective evaluations than objective evaluations. Amos, et al., (1982) also found that individuals living in low economic areas rated life satisfaction just as positively as individuals living in more economically developed areas according to subjective evaluations of both groups.
INCORPORATING BOTH OBJECTIVE AND SUBJECTIVE MEASURES IN QOL Well-being is influenced by both affect and cognition according to McKennell and Andrews (1983). Supporting this viewpoint, Wilkening and McGranahan (1978) investigated the influence of both objective and subjective indicators. They examined the influence of an objective indicator (SES) and the influence of a subjective indicator (interpersonal relationships) on QOL. Their results indicate that while changes in either objective or subjective measures influence QOL, changes in interpersonal relationships (a subjective measure) has a greater effect on life satisfaction than changes in SES (an objective measure). A study by Campbell (1976) found that the influence of objective and subjective indicators can be interrelated and point out the importance of incorporating both in a QOL measure. Campbell (1976) found that satisfaction with marriage (subjective indicator) was directly related to the presence 9 and age of children (objective indicators). Glenn & Weaver (1979) provide further evidence that the existence of very young children or teenagers in a family does influence the level of overall happiness in a marriage. Franklin, et al., (1986) proposes a QOL model which incorporates both objective and subjective measures of well-being. Cheng (1988) supports a model incorporating objective and subjective indicators and advocates the importance of including both measures when evaluating QOL. In distinguishing between the two types of measures, objective indicators tend to be more specific (adequate/inadequate) in nature, while subjective indicators are usually more global (satisfactory/unsatisfactory) in nature (Cheng, 1988). Franklin, et al., (1986) also suggest that a QOL model include an objective measure of life situations and a subjective measure of satisfaction with life situations. However, the QOL model outlined by Franklin, et al., (1986) proposes that a third measure also be included. This third component involves a measure of adaptation to life situations. Andrews and McKennell (1980) investigated the influence of both subjective (affective) and objective (cognitive) measures on indices of well-being. Their study found the estimated variance due to affect is 14-33%, due to cognition is 12-35%, and due to method is 0-10%. These results provide evidence that cognition and affect both play influential roles in the interpretation of well-being. A 1 0 study by Campbell (1976) also provides evidence for the influence of both happiness (subjective) and satisfaction (objective) measures in defining QOL. As a result of their study, Campbell (1976) indicate that while both influence QOL, satisfaction appears to be a more consistent construct, as happiness may fluctuate according to changes in mood.
DIFFERENTIATING BETWEEN GLOBAL & DOMAIN SPECIFIC MEASURES OF QOL QOL indexes may be composed of measures that are strictly global (Diener, et al., 1985), that are strictly domain-specific (Liu, 1976), or that are a combination of both global and domain-specific measures (Campbell, 1976). Global measures are predominantly concerned with general, or overall happiness of the individual. While global measures involve evaluation of overall satisfaction with life quality, domain-specific measures focus on evaluation of satisfaction with particular areas of interest or concern to the individual. Domain-specific measures are narrow in scope, and identify happiness or satisfaction in specified areas such as work or family life. Diener, et al., (1985) developed the "Satisfaction With Life Scale" (SWLS) to measure global life satisfaction from a cognitive point of view. The SWLS was devised to measure an overall judgment of satisfaction with life. This strategy was 1 1
employed to avoid interpretation based solely on single items or domains. Liu (1976), on the other hand, developed a QOL measure that focuses strictly on the evaluation of objective, domain-specific items. This index evaluates the degree of satisfaction with the economic, political, environmental, health, education, and social life domains of the individual. A QOL index that incorporates both global and domain-specific measures was created by Campbell (1976). This measure was constructed so that evaluations of domain- specific indicators of satisfaction are collectively summed to predict an overall global measure of satisfaction.
MEASURING QOL FOR THE NORMAL POPULATION A study by Campbell (1976) was one of the first attemptsto define QOL using a representative sample of the population of the United States. Their survey, titled "Index of Well-Being" is designed to measure an individual's satisfaction with their current life situation. It requires individuals to rate 17 different life domains, and includes a rating of overall satisfaction. The questionnaire focuses completely on an affective evaluation of QOL. Responses are chosen using the following semantic differential scales: Boring-Interesting; Miserable-Enjoyable; Hard-Easy; Useless-Worthwhile; Lonely-Friendly; Empty-Full; Discouraging- 1 2
Hopeful; Tied-Down--Free; Disappointing-Rewarding; and Doesn't Give Me A Chance-Brings Out The Best In Me. Another national QOL survey was conducted by Flanagan (1978). Flanagan identified 15 life domains as defining QOL. These 15 life domains are categorized into the areas of Physical and Material Well-Being; Interpersonal Relationships; Social, Community and Civic Activities; Personal Development and Fulfillment; and Recreation. Based upon the life domains developed by Flanagan (1977), Evans, et al., (1985), identified five similar domains as most greatly influencing QOL. Franklin, et al., (1986) developed a QOL model that was based on the needs of chronic mental patients living in the community. They measured the life situations of housing, living arrangements, social relations, leisure, income, and employment. A subjective assessment was also done in relation to the individual's perceived satisfaction with each of these life situations. These studies focus on the measurement of QOL for normal adults and include life domains that are limited in application to an adolescent population. QOL studies for the normal population have not specifically addressed the needs of adolescents.
INVESTIGATING QOL FOR THE MENTALLY RETARDED Research on the evaluation and definition of QOL for the mentally retarded, has up until this point focussed on the IQ, age, or time spent in an institutional residential facility (Hill, et al., 1984). 13
This research focus does not address the evaluation of satisfaction with life domains that influence QOL. Instead, it is a measure of personal characteristics that influence, but do not define the meaning of QOL for the mentally retarded individual. There is a paucity in the research (Franklin, et al., 1986) involving the use or development of a QOL index or assessment technique for evaluating QOL for the mentally retarded population. Those QOL studies which have been conducted (Hill, et al., 1984; Tapper, 1978; Schalock, et al., 1989; and Schalock & Lilley, 1986) mainly focus on QOL for adults who are mentally retarded. The development of a measure that is applicable to the mentally retarded adolescent population has yet to be investigated. Landesman (1986) challenges the American Association on Mental Deficiency (AAMD) to assume a leadership role in investigating ways to define, operationalize, and monitor QOL, and to develop a valid measure of QOL to evaluate the programs, treatments, and environments of the mentally retarded.
OPERATIONAL DEFINITION OF QOL Due to the fact that various terms representing different aspects of QOL are used interchangeably to define QOL, and because a variety of personal characteristics and/or life domains have been subjectively selected in the definition of QOL, "a precise and universally accepted definition of the concept has yet to be framed" (Schuessler and Fisher, 1985, p.132). Quality of Life is defined for 14 the purposes of this study as the subjective and objective evaluation of the life domains of socialization, recreation, education, and vocation by Developmentally Handicapped and normal adolescents. The overall QOL rating is defined as the composite score of the four life domain ratings.
UTILIZING QOL INFORMATION TO ENHANCE QOL Evans, et al., (1985) state that while most QOL research has focussed on the evaluation of QOL, research has not, however, investigated how the measurement of QOL can lead to the enhancement of QOL. Although measures have been developed to determine QOL, ways to effectively use this information for improving life quality have not been explored. Two types of information can be obtained by using a QOL index. Information can be gained to determine goodness of fit or to measure program success. Goodness of fit refers to how well a person's environment fits their needs. Goodness of fit is a comparison of an individual's capabilities with the requirements of their environment. The greater the goodness of fit, the higher the QOL. Schalock, et al., (1989) supports the trend in using QOL measures as an evaluation of goodness of fit rather than merely as a descriptive evaluation. When used as an outcome measure, QOL indexes represent the degree of success in meeting program goals. Cheng (1988) states that QOL 15 measures could play an important role in the evaluation of needs and in program planning. Baker & Intagliata (1982) state that QOL measures can be used as a needs assessment tool as well as a method for program evaluation.
PROBLEM STATEMENT The problem statement is as follows: What is the feasibility of developing a questionnaire to evaluate the Quality of Life of Developmentally Handicapped and normal adolescents? In order to answer this question the internal reliability of the four life domains and the internal reliability of the overall QOL measure will be investigated. In addition, an examination of group differences for domain and overall QOL ratings between the Developmentally Handicapped and normal students (matched according to chronological age, sex, and race) will be made.
LIMITATIONS The focus of this study is limited to the exploration of the feasibility of creating a measure for the evaluation of Quality of Life applicable to the Developmentally Handicapped and normal adolescent population. This exploratory research involves the identification of life domains relevant to Developmentally Handicapped adolescents, the creation of items which adequately evaluate these life domains, and the establishment of a scoring 1 6 system which will provide a method for interpreting the item, domain, and overall QOL ratings. The scope of this study does not encompass the scientific investigation or statistical analysis required in the development of a standardized instrument for publication. Instead, the purpose of this study was to provide evidence to support the feasibility of developing and utilizing an instrument for measuring QOL among Developmentally Handicapped adolescents.
RESEARCH QUESTIONS The following questions are of interest for consideration in the investigation of a measure to evaluate Quality of Life for Developmentally Handicapped adolescents:
1) Do the domains of the QOL Questionnaire (Socialization Domain, Education Domain, Recreation Domain, and Vocation Domain) have adequate internal reliability for normal subjects?
2) Does the QOL Questionnaire have adequate internal reliability for normal subjects?
3) Do the domains of the QOL Questionnaire (Socialization Domain, Education Domain, Recreation Domain, and Vocation Domain) have adequate internal reliability for Developmentally Handicapped su b je cts?
4) Does the QOL Questionnaire have adequate internal reliability for Developmentally Handicapped subjects? 17
5) Does the QOL Questionnaire show similar reliability for normal and Developmentally Handicapped subjects?
6) Do normal and Developmentally Handicapped subjects differ in their rating of overall QOL?
7) Do normal and Developmentally Handicapped subjects differ in their QOL rating of the Socialization, Education, Recreation, and Vocation domains?
8) Do gender differences exist in the evaluation of QOL? CHAPTER II LITERATURE REVIEW
The first attempt to formally differentiate between students who are mentally retarded and those who are normal began in Paris in 1903 (Hothersall, 1974). In 1903, the French Ministry of Public Instruction appointed a Commission for the Retarded to investigate the difficulties encountered in educating children who are mentally retarded in the public schools. The Commission for the Retarded recommended that children in the public schools suspected of mental retardation be evaluated, and based upon the results of the evaluation, students identified as educable would receive public educational instruction in a special classroom isolated from the rest of the school population. One of the methods employed to identify the educable mentally retarded was a measure of intellectual level using an intelligence test developed by Alfred Binet, a member appointed to the Commission for the Retarded. An evaluation of a child's current level of intellectual functioning is still used today in the identification of children who are mentally handicapped. However, unlike the isolation policy of the French in 1903, today educational goals for children who are mentally retarded encourage mainstreaming into, rather than isolation from, regular education experiences. Public Law 94-142, known as the Education for All Handicapped Children Act, was passed 18 1 9 in 1975 entitling all children identified as handicapped to a free, appropriate, public education provided in the least restrictive environment. Public Law 94-142 outlines various types of special education services available to children who are handicapped. Many of these programs include a measure of intelligence as a key requirement for qualification of special education services. One of the special education programs provided by Ohio public schools in compliance with Public Law 94-142 is the Developmentally Handicapped (or Mentally Retarded) program. Eligibility criteria for Developmentally Handicapped as stipulated in rule 3301-51-01 of the Administrative Code of the Rules for the Education of Handicapped Children (Ohio Department of Education, 1982). The definition and criteria for this diagnosis are as follows:
Definition: "Developmentally Handicapped” (mentally retarded) means significantly subaverage general intellectual functioning existing concurrently with deficits in adaptive behavior manifested during the developmental period, which adversely affects a child’s educational performance, (p. 5) Diagnosis: 1. Eligibility A child who meets the definition for developmentally handicapped in paragraph N. of rule 3301-51-01 of the Administrative Code and the following requirements shall be 20
eligible for special education programming and related services for developmentally handicapped children, a. Each child shall have a multifactored evaluation for initial placement that includes, but is not necessarily limited to, evaluations in the following areas: (i) General intelligence as determined through a measure of cognitive functioning administered by a qualified psychologist using a test designed for individual administration: (ii) Academic performance; (iii) Hearing, vision, and motor abilities; (iv) Communicative status; and (v) Adaptive behavior. b. In addition to the requirements for eligibility mentioned above, personnel shall also draw upon information from a variety of sources, including teacher recommendations, physical condition, and social or cultural background. c. Each child shall have a measured intelligence quotient of eighty or below. d. Each child shall exhibit deficits in academic performance. e. Each child shall exhibit deficits in adaptive behavior which adversely affect the child's educational performance and/or independent daily living skills. Evidence of deficits in a minimum of two areas of adaptive behavior must be documented through the use of individually administered 21
standardized instruments which have been validated for the specific purpose of measuring adaptive behavior, (p. 66)
Recent educational trends have placed emphasis on efforts to mainstream individuals who are mentally retarded (Landesman, 1986). This trend illustrates the fulfillment of the guarantee made by Public Law 94-142 to provide the least restrictive environment in educational placement for the mentally retarded. A similar trend in residential placement of the mentally retarded is also evident as seen by the increase in the deinstitutionalization of the mentally retarded (Pratt, Luscz, & Brown, 1980). State institutions have reduced the size of their populations with the result being an increase in the number of group homes providing residential service. The purpose of this trend is to provide a more normalized living experience for mentally retarded individuals (Pratt, et al., 1980). Although federal regulations such as Public Law 94-142 have been established to guarantee the quality of education for the mentally retarded, Landesman (1986) points out that there are no formal ways of defining or monitoring the quality of life (QOL) for the mentally retarded. Schalock, et al., (1989) identify the importance of addressing the issue of QOL for the mentally retarded and report that "QOL has recently become an important issue in human services and may replace deinstitutionalization, normalization, and community adjustment as the issue of the 1990's1' (p. 25). 22
DEFINITION OF QOL Quality of Life is defined by Franklin, et al., (1986) "as a state of well-being that is reflected by life conditions, satisfaction with life conditions, and adaptation to life conditions" (p. 376). Inge, Banks, Wehman, Hill, and Shafer (1988) indicate that "QOL is very much a personal observation based on a given individual's needs, preferences, and aspirations" (p. 103). Because there have been different focuses on the conceptual measurement of QOL, much variation exists regarding the definition of QOL (Schalock, et al., 1989). However, QOL can be more specifically defined according to the meaning of its components, that of quality and life. Schuessler and Fisher (1985) define the concept of quality in terms of a grade. The grade ranges from low to high, or bad to good, according to an objective measurement. The definition of life, however, is not as easily agreed upon (Edlund & Tancredi, 1985). This lack of agreement on the definition of life is illustrated in the research on QOL (Flanagan, 1977; Wilkening & McGranahan, 1978; Campbell, 1976; Evans, et al., 1985; Scheussler & Fisher, 1985; and Franklin, et al., 1986) which define different categories, or life domains, as central components of the definition of life. QOL may be defined according to objective or subjective measures. Objective indicators of life describe the particular conditions that influence life experience without directly assessing 23 life experience. Campbell (1976) states that "QOL lies in the experience of life" (p. 117) and not solely on the objective indicators of life. While subjective indicators do not provide the measurement precision equal to that of objective indicators, their value lies in their ability to reveal the individual's sense of well-being (Franklin, et al., 1986). Cheng (1988) reports that Quality of Life, well-being, happiness, and satisfaction are often used interchangeably throughout the literature although they may not necessarily represent the sam e thing. QOL and well-being refer to an overall evaluation of life conditions. Happiness and satisfaction are particular components that uniquely serve to define QOL. Happiness refers to an evaluation of an emotional (subjective) experience, while satisfaction is the result of a comparison of objective conditions to some internal standard.
GLOBAL AND DOMAIN-SPECIFIC EVALUATIONS OF QOL Global well-being ratings are used to represent an overall measure of QOL, while domain-specific well-being ratings represent an evaluation of a particular aspect of life, such as work or family life. QOL indexes may be composed of strictly domain-specific evaluations (Liu, 1976), that provide only a global measure of QOL (Diener, et al., 1985), or that are a combination of both domain- specific and global ratings (Campbell, 1976). 24
POPULATIONS STUDIED QOL has been investigated for particular populations such as the elderly (Michalos, 1982, & Lawton, 1975), the chronically ill (Strauss, 1975), and the mentally ill (Baker & Intagliata, 1982; and Franklin, et al., 1986). While the existence of certain life domains are generally consistent among various populations, varying degrees of importance are placed on different aspects of QOL, according to the needs of that particular population (Diener, et al., 1985). The value placed on the interests and needs specific to each individual, or group of individuals, influences the definition of QOL. The selection and development of an assessment instrument to measure QOL also influences the definition of QOL. Different measures may focus their evaluations on different life domains which would mandate how QOL is defined.
INDEXES FOR MEASURING QOL FOR NORMALS There have been various measures developed to evaluate QOL (Flanagan, 1977; Andrews & Withey 1976; McKennel & Andrews, 1983; Evans, et al., 1985; Franklin, et al., 1986; Hill, et al., 1984; and Schalock, et al., 1989). These measures differ in the life domains evaluated, the format of the questionnaire utilized, the method of responding, and the system of scoring and evaluating responses. Because this study explores the feasibility of developing a QOL Questionnaire for Developmentally Handicapped adolescents, 25 the following review of the literature will focus on aspects of existing QOL measures that most significantly influence the development of an instrument for adolescents who are mentally retarded. Therefore, emphasis will be placed on identifying the population studied, the method used to develop specific items and life domains, and the statistical analysis of other QOL indexes.
Flanagan. Flanagan (1977) developed a questionnaire to determine the most important aspects influencing a person's perception of QOL. The initial stage in the development of the questionnaire was to determine the critical components of an individual's QOL. A total of 6,500 critical incidents influencing QOL were identified by 3,000 adults of differing age, race, and background from various regions of the country. These critical incidents were categorized based on similarities of experiences. A total of 15 categories were identified and organized to represent five life domains. The 15 categories and the domains in which they are contained are as follows: the Physical and Material Well-Being Domain includes the measures of material well-being and financial security; and health and personal safety categories. The Relations With Other People Domain involves relations with spouse; friends; parents, siblings, or other relatives; and having and raising children. The Social, Community, and Civic Activities Domain consists of activities related to helping or encouraging other people; and activities 26 relating to involvement in local and national governments. The Recreation Domain includes socializing; passive and observational activities; and active and participatory activities. The Personal Development and Fulfillment Domain involves intellectual development; personal understanding and planning; occupational role; and creativity and personal expression. Flanagan (1977) then contacted an additional 3,000 people from across the country to determine the importance of each of the 15 factors identified as defining QOL. Flanagan questioned 1,000 30-year-olds, 1,000 50-year-olds, and 1,000 70-year-olds. The individuals were asked to evaluate the importance of each of the 15 factors using a 5-point rating scale composed of the response choices: very important, important, moderately important, only slightly important, and not at all important. The individuals were also requested to rate the degree to which their wants and needs were currently being met for each of the 15 factors. These responses were also rated on a 5-point scale with the response choices: very well, well, moderately well, only slightly well, and not at all well. The sample was asked to make a third evaluation which involved a judgment of their current overall quality of life. Response choices were again presented on a 5-point scale. The response choices for the overall rating of QOL were excellent, very good, good, fair, and poor. Flanagan's results indicate that the factor of health and personal safety was rated as important or very important by 95% of 27
the sample. More than 90% of the men, and 85% of the women at ages 30 and 50 report work to be important. More than half of both men and women at age 70 also rate work as important. Having and raising children, as well as understanding self, were two other factors rated important by 80% of the sample. The Personal Development and Self-Fulfillment Domain was rated second in importance by 80% of the sample. Other subcategories rated as high in importance was having and raising children (75%), and relationships with friends by 80% of the women and 70% of the men. Both of these subcategories are included in the Relationships With Others Domain. Of the 15 QOL factors, the highest correlation coefficients with overall quality of life were obtained by the factors of material comforts, health, work, active recreation, learning, and creative expression. The intercorrelations of the 15 factors differ slightly between groups according to age and sex. A varimax-rotated factor matrix based on intercorrelations produced three major factor loadings. The first factor is composed of material comforts, work, and health. Close friends and socializing defines the second factor, while the third factor involves learning and creative expression. Flanagan (1977) summarizes these results by stating that, "as was intended in setting them up, these 15 components defining quality of life tend to be fairly independent, and only a relatively small amount of the variance is included in the three factors. Each component makes its own contribution to quality of life" (p.144). 28
Flanagan (1977) identifies shortcomings experienced when employing strictly subjective evaluation measures. Subjective ratings can be negatively distorted by memory that is incorrect or selective in nature. Subjective ratings may also be influenced by recent experiences that effect the current evaluations. Also, subjective ratings may be made on past experiences instead of evaluating current experiences. In view of the possible difficulties encountered when using subjective measures, Flanagan (1977) suggests investigating the additional use of objective QOL measures.
Andrews & Withev Andrews and Withey (1976) support the use of subjective QOL indicators and incorporated a subjective component in their QOL measure. The three components which compose their QOL index include cognition, positive affect, and negative affect. The cognitive component requires an individual to evaluate their present state of satisfaction with life. Affect is measured using Bradburn's Affect Balance Scale (1969) in which individuals are to identify any positive or negative feelings experienced within the past few weeks. A total of 1072 respondents compose the representative sample of American adults surveyed by Andrews and Withey (1976) in regard to QOL. This survey investigated eight measures of global well-being based on responses to Bradburn's Positive and Negative Affect Scale as well as the following six questions: 1) "How do you feel about your life as a whole? (this question was asked again later 29 in the interview); 2) How satisfied are you with your life as a whole these days?; 3) In general, how satisfying do you find the way you're spending your life these days?; 4) Taking all things together, how would you say things are these days?; and 5) How do you feel about how happy you are?" (Andrews & Withey, 1976, p. 100). Each of these questions were answered using a semantic differential scale.
McKennel & Andrews McKennel and Andrews (1983) analyzed data obtained from a previous study by Andrews and Withey (1972) in order to identify factors influencing QOL. McKennel and Andrews (1983) advocate the importance of including subjective measures in the evaluation of QOL, demonstrating that cognitive and affective factors both influence an individual’s perception of QOL as supported by a confirmatory factor analysis. McKennel and Andrews (1983) developed an Affect-Cognition model to explain the influence of these two components on QOL ratings. The Affect-Cognition model proposes that a person’s current evaluation of QOL is influenced by a combination of their personal aspirations, standards of reference, and mood. QOL is therefore determined by interaction of an individual's feelings (affect), values (cognitions), and actions (behaviors). The Affect-Cognition model suggests that the global measure of affect and cognition have the greatest impact on the overall QOL rating, and that the life domains have only indirect 30 associations with the overall QOL rating through their relations with global ratings of affect and cognition.
Evans. Burns. Robinson. & Garrett Like McKennel and Andrews (1983), Evans, et al., (1985) also support the inclusion of behavioral components that influence QOL. According to Evans, et al., (1985), "certain actions or behaviors on the part of an individual in response to particular environmental domains can be considered to represent a good quality of life" (p. 307). The Quality of Life Questionnaire developed by Evans, et al., (1985) involves a measure of an individual's behavioral response to ecological domains. Following a principal components factor analysis, employing an orthogonal rotation by varimax method to extract five factors, results did not support the original hypothesized subdomain groupings. However, the five life domains and the subdomains that were supported by the factor analysis are: Occupational/Material Well-Being; Social Well-Being (creative/aesthetic involvement, friendships, altruistic and political activity); Family Well-Being; Personal Well-Being (personal growth and sports activities), and Physical Well-Being. The factor loadings for the subdomains ranged from .36 to .79. The Quality of Life Questionnaire scale scores indicate moderate correlations with overall life satisfaction. The preliminary questionnaire consisted of 452 items measuring the 15 subdomains. The items are answered true or false 31 with the items positively and negatively keyed to control for response acquiescence. Five decision rules were applied in order to refine the items of the 15 domains. Items were deleted that were too infrequent (< .15), or too frequent (> .85), or that had a higher correlation with a domain other than the one for which it was developed. The subscales were reduced from 30 items to 12 items. Kuder Richardson-20 estimates of internal reliability of the 15 domains ranged from .61 to .96. The item-total correlations of the 15 domains ranged from .34 to .52. If subjects did not answer a particular domain because it was non-applicable (such as the marital relations scale for a single person), "a quality of life score was computed by multiplying the average score for all scored scales by 15 to produce an interpolated total score" (Evans, et al., 1985, p. 314).
Franklin. Simmons. Solovitz. Clemons. & Miller Franklin, et al., (1986) propose a model of QOL that includes objective indicators of life situations, subjective indicators of satisfaction with these situations, and a measure of adaptation to life situations. Franklin, et al., (1986) included a measure of adaptation to life situations in the QOL model since they strongly believe that the focus of mental health professionals should be on helping an individual learn to adapt to life situations. Their QOL model identifies six life domains. Franklin, et al., (1986) propose that life situations be measured in relation to Housing (type), Living 32
Arrangements (with whom), Social Relations (number of friends), Leisure (number of activities), Income (individual monthly income), and Employment (employed/unemployed). Franklin, et al., (1986) administered their QOL index to 417 chronic mental patients, 18 to 64 years of age. These mental patients evaluated their QOL in terms of subjective, objective, and adaptive measures of life situations. Subjective assessments of life situations measure the degree of satisfaction with the six life domains using a 5-point Likert scale. Objective evaluations of life situations were made by the direct care staff. Adaptation to life situations were rated in terms of activities of daily living, Bradburn's Affect Balance Scale (1969), and self-esteem. Results of this study indicate that objective measures of life conditions are not highly correlated with the subjective and adaptation m easures of QOL. A significant relationship did exist, however, between subjective measures and adaptation measures in determining QOL. Based upon their research, Franklin, et al., (1986) report that it is the subjective evaluation by the individual, rather than the objective decisions of the direct care staff, that more accurately identify the QOL of the individual.
Campbell The ten life domains investigated by Campbell (1976) are life cycle, urbanicity, age, race, working or other, family income, occupation of head of household, education, religion, and sex. 33
Campbell (1976) found that age contributed most to the variance in measuring well-being, even more so than income, as might be expected. Their sample consisted of 2,164 men and women aged 18 and older from the 48 contiguous United States. They obtained an assessment of well-being, or happiness, in 10 domains of life experience using three measures. These measures focussed on the satisfaction, general affect, and perceived stress in each life domain.
QOL RESEARCH FOR THE MENTALLY RETARDED Hill. Rotegard. & Bruininks In a study by Hill, et al., (1984) a closer look was taken at the QOL of mentally retarded in the residential setting. Hill, et al., (1984) point out that most studies on the mentally retarded in residential centers focus on the age, IQ, or length of stay of the individual. Research has not been focussed on the evaluation of the QOL provided while residing in that facility. A study by Hill, et al., (1984) investigates QOL for the mentally retarded by comparing the family, leisure, and social activities of mentally retarded individuals living in public and community residential facilities. Their study included 953 individuals from private residential facilities and 2,271 from public residential institutions. The subjects ranged in age from less than one year, to 78 years old. 34
These individuals were selected as a national representation of the mentally retarded living in residential facilities across the country. Direct-care staff were interviewed to determine program plans, leisure-time activities, family and social contacts, specialized services, and physical, health, and behavioral characteristics of each resident. The direct-care staff were asked to identify the leisure activities each resident had participated in during the past week. The percentage of free time spent in each activity was also recorded. Results indicate that 93% of an individual's free time in a private residential facility is spent watching TV, listening to the radio, or playing records. Those in public settings spend approximately 84% of their free time in the sam e type of activities. According to Hill, et al., (1984) these kinds of activities discourage social interaction and that "because of a lack of . . . structured programs for learning leisure-time activities, many retarded persons spend most of their free time in activities that do not require social interaction" (p. 275). In regard to personal visits, residents in private facilities visit with a friend outside of the facility 16% of their leisure-time, while those in public facilities only have the opportunity to interact with an outside friend 5% of the time. Those in private facilities receive more visits (80%) from family than those in public settings (64%). However, on the average, the frequency of visits is only one to three times a year. Fletcher (1979) reported positive effects on the client’s adaptive behavior 35 following visitation by family members. Staff ratings indicated that 38% of private facility residents and 32% of the public facility residents would like additional activities available for leisure time. Hill, et al., (1984) report that "although normal social and community experiences are important to the development of social skills in mentally retarded people, little attention has been paid to the social and leisure activities of this population in residential care" (p. 275).
Tapper Tapper (1978, unpublished doctoral dissertation) investigated the opinion of Executive Directors of Associations for Retarded Citizens and State Directors of Mental Retardation divisions as to their perception of the needs of the mentally retarded regarding recreation/leisure activities and friendships. Executive Directors (the service providers) ranked recreation/leisure as 4th and friendships as 10th in importance, while State Directors (the funding providers) ranked recreation/leisure as 37th and friendships as 44th! Thus, those who are responsible for the direct care of the residents identify the important need for social and leisure activities, while those who write the policies and determine the funding do not view these needs as deserving a high priority. Social interaction and involvement in relationships with others play an integral part of life satisfaction (Fletcher, 1979). Hill, et al., (1984) emphasize the value of social interactions by stating that 36
"family, leisure, and social activities warrant . . . important considerations in policymaking, planning, and case management for mentally retarded people in residential care" (p. 280).
Schalock. Keith. Hoffman & Karan Schalock, et al., (1989) developed a QOL Index for use as either an outcome measure for human service programs, or as a measure of goodness-of-fit between developmentally disabled persons and their environments. As a measure of goodness of fit, the better the fit, the higher the QOL. The QOL Index created by Schalock, et al., (1989) consists of 28 criterion-referenced items that represent three components of QOL for each individual. These components are environmental control, social interaction, and community utilization. This index is designed to measure the factors of independence, community integration, and productivity. The questionnaire employs a 1- to 3-point Ukert-type scale for answering the items. The sum of the ratings of the 28 questions range from low QOL scores (28) to high QOL scores (84). The index was administered to 685 adults with developmental disabilities (mild to moderate mental retardation) participating in Nebraska’s Community Based Mental Retardation Program as well as high school graduates of special education programs. The psychometric properties of the QOL Index report adequate inter-item correlations of .83. Item-to-scale correlation coefficients ranged from .03 to .65, with an average value of .36. 37
Results indicate that goodness of fit was best for those individuals living with little supervision or complete supervision. Higher scores on the QOL index were obtained by mentally retarded individuals whose situation "more nearly approximated normal community life and that imposed fewer environmental restrictions" (Schalock, et al., 1989, p. 28). A significant inverse relationship was discovered between QOL and level of self care skills. QOL indices were found to decrease as the amount of reliance on direct care staff increased. Results also indicate that QOL ratings are positively related to level of intelligence, but are unrelated to sex. Schalock and Lilley (1986) obtained similar findings in a follow-up study of 85 individuals from the Mid-Nebraska Mental Retardation Program 8 to 10 years after they had been placed in independent housing and competitive employment. Following completion of the QOL Questionnaire by these individuals, a higher rating of QOL was reported by those individuals who had maintained residential and vocational placements and were living independently and employed part time. Those individuals living in mental health facilities or with their parents received the lowest QOL ratings.
NEED FOR A QOL MEASURE FOR THE MENTALLY RETARDED To determine the effectiveness of any program or treatment for the mentally retarded, evaluative methods need to be developed. Landesman (1986) points out that for the mentally retarded, there has been no development of "clear procedures of measuring the 38
success of a given program at an individual level, that is, sensitive to a person's own perception of QOL and adjusted to specific goals in that individual's life" (p.142). Landesman (1986) recommends that the American Association for the Mentally Disabled (AAMD) assum e a leadership role in developing a valid measure for the evaluation of QOL for the programs, treatments, and environments of the mentally retarded.
VOCATION AS A QOL DOMAIN FOR THE MENTALLY RETARDED Franklin, et al., (1986) state that QOL for the mentally retarded should focus on the care, treatment, work availability and opportunities for personal interactions. Previous studies involving the measure of QOL for the mentally retarded have addressed the areas of care, treatment, and availability of personal interactions. However, the influence of employment on QOL for the mentally retarded was not as thoroughly addressed. The focus on placement into community settings to improve QOL includes placement in employment as well as residence. Many studies have been done which cite the important role employment plays in the lives of the mentally retarded. Research conducted by Inge, et al., (1988) provides evidence that programs developed to place adults who are mentally retarded into work settings within the community are successful. Findings from their study indicate that mentally retarded individuals working in the community contribute to their communities through successful employment. Inge, et al., (1988) 39 found a positive effect on QOL for those who work in competitive employment when compared to those in sheltered workshops. Previously, job opportunities for mentally retarded individuals consisted of adult day programs, activity centers, and sheltered workshops. With improved job skills training programs, the mentally retarded are now offered more opportunities for employment in the community (Gersten, Crowell, and Bellamy, 1986). Nisbet and Vincent (1986) compared the influence of sheltered workshops and community work settings on inappropriate behavior and work interactions. Their study indicated that inappropriate behavior occurred significantly fewer times in the community setting. They also found that individuals working in the community setting experienced more positive instructional interaction with their supervisor than those in a sheltered work setting. Gersten, et al., (1986) investigated the effect of earning wages on independent living skills and social behavior. They found that the workers who demonstrated the most improvement through their Specialized Training Program (STP) also showed improvement in independent and perceived competence. To identify improvement, a pre-assessment and two post-assessments (at three and six months) was conducted. The Parent/Guardian survey is an instrument they developed to evaluate performance in domestic skills, appearance, community participation, leisure/recreation, social/vocational skills, and financial activity. The experimental group was matched with a control group on the basis of sex, age, 40 physical and sensory involvement, parental support, and functioning level. Their results indicate significant increases for the experimental group in the areas of community participation, social/vocational, fiscal responsibility, financial activity, and weekly work income. The change was significant between the pre test and the 3-month post-test. No significant changes were recorded for the control group. In regard to physical health, there was a significant decrease in weight of the experimental group while an increase in weight was observed in the control group. Those individuals in competitive employment showed greater advances as measured by the Economic Activity, Language Development, and Number and Time subscales of the AAMD Adaptive Behavior Scale (Nihira, Foster, Shellhaas, & Leland, 1974) when compared to those in sheltered employment. Sheltered employment includes adult day programs, activity centers, and sheltered workshops. According to results of the Parent/Guardian Survey completed by caretakers, individuals working in the community showed increases in community participation, social vocational skills, and fiscal responsibility.
BENEFITS OF USING A QOL MEASURE The information obtained from the psychological indicators of QOL measures is valued as a means of contributing to changes in public policy (Tolman, 1941). Baumeister (1981) points out that 41 although studies have identified basic principles of human adaptation specific to the mentally retarded population, this information is rarely incorporated into public policy. Murrell and Norris (1983) state that "resource decisions should be dictated by the needs of the population, not those of elected officials or professional administrators" (p. 89). Developing a reliable and valid QOL index which accurately measures the needs of the mentally retarded population, would provide strong evidence to support the need for change in current public policy regarding the perceived needs of these individuals (Cheng, 1988). A QOL index may be employed for the functional use of determining the degree of effectiveness or success of specific programs (Chubon, 1987). A QOL index provides a functional benefit in that it provides an accurate and applicable assessment measure (Franklin, et al. 1986). Cheng (1988) indicates that a QOL questionnaire that evaluates the effectiveness of a program which provides QOL to its clients would be very valuable for use in monitoring program success. A QOL index can be used as a needs- assessm ent device (Murrell & Norris, 1983) to more appropriately identify the needs of an individual. This information can then be used to develop a more applicable individualized program. Baker and Intagliata (1982) point out practical aspects of a QOL index. A QOL measure can be administered to a large number of people at one time, greatly reducing the cost of administration time and money. A QOL measure can also be administered on a routine 42 basis without the need for modification. Another practical benefit of a QOL index is that it can be easily modified for specific populations with minimal requirements for administration (Evans, et al., 1985).
STUDYING ADOLESCENTS Adolescence is derived from the Latin adolescere which is defined to mean "to grow into maturity" (Sebald, 1984, p. 3). Adolescents vary in the speed at which their identity is established. The onset of puberty usually signifies the entrance into adolescence. This is during the age of 12-14 for girls, and 13-15 for boys. Adolescence is categorized into three phases. The first phase of adolescence is known as early (11-13 years), followed by middle (14-16 years), and finally late (17 years and up). The students in this study were of middle and late adolescence. The meanings of many things, activities, and relationships with others change as adolescents mature. For example, during early adolescence friends are a source of companionship and someone with whom to do things. During middle adolescence friendship develops an emotional component and more emphasis is placed on interaction. Late adolescence sees a recession in the intensity of friendship and less dependence on one another. Heterosexual relationships begin to develop which decreases the need and desire for a same-sex friendship. 43
Peer pressure is also affected by the age of the adolescent. The degree of conformity is directly related to the age of the adolescent, with an increase in age bringing about a decrease in conformity and an increase in independence. Adolescents are under much pressure to conform to a peer group in order to obtain security and acceptance. "Adolescents are susceptible to the influences of others and do often conform to the opinions and beliefs of their group" (Forisha-Kovach, 1983, p. 276). Adolescence is a time of change and a time of challenge to that change. Changes can be the result of internal development, culture, or social demands made by the progression from childhood into adulthood. When adolescents are unable to make these changes or accept these challenges, they remove themselves from the mainstream either psychologically or socially through withdrawal or active rebellion (Atwater, 1983). As a result, some adolescents may become alienated and estranged from either their self or society. Pathologies may develop expressed in the form of eating disorders, phobias, or depression. Others may turn to delinquency or substance abuse when unable to cope with challenges and changes. Gallagher & Harris (1958) report that emotional problems for adolescents center around sex, achieving independence (rebellion and dependence), anxiety states, psychosomatic disorders, scholastic failure, and stealing or other anti-social behavior. 44
All of the changes, interests, and pressures of an adolescent need to be acknowledged when working with an adolescent population. When trying to develop a measure to evaluate the people, things and activities adolescents value most, one must keep in mind that in a matter of minutes, a teenager can switch from elation to the deepest blues, and then back again (Csikszentmihalyi & Larson, 1984, p. 108).
SUMMARY This chapter has defined Quality of Life and its components. It has also identified studies which have been done with various populations to investigate Quality of Life, and pointed out the limited amount of research that has been done in regard to the evaluation of Quality of Life for mentally retarded and adolescent populations. The benefits of developing such a measure were also addressed. This study aims to explore the development of a Quality of Life Questionnaire designed to measure life quality for normal and mentally retarded adolescents. The specific issues to be addressed in the exploration of the Quality of Life Questionnaire are identified in the hypotheses outlined below. 45
HYPOTHESES The purpose of this study is to investigate the feasibility of developing a questionnaire that will evaluate the quality of life of normal and Developmentally Handicapped adolescents. The hypotheses of this study are stated as follows:
1) The domains of the QOL Questionnaire (Socialization Domain, Education Domain, Recreation Domain, and Vocation Domain) will have adequate (r .70) internal reliability. 2) The QOL Questionnaire will have adequate (r ^ .80) internal reliability for normal subjects. 3) The domains of the QOL Questionnaire (Socialization Domain, Education Domain, Recreation Domain, and Vocation Domain) will have adequate (r .70) internal reliability for Developmentally Handicapped subjects. 4) The QOL Questionnaire will have adequate (r ^ .80) internal reliability for Developmentally Handicapped subjects.
5) There will be a statistically significant difference (p < .05) between internal reliability of the QOL Questionnaire for normal and Developmentally Handicapped subjects.
6) There will be a statistically significant difference (p ^ .05) between overall QOL ratings of normal and Developmentally Handicapped subjects. 46
7) There will be a statistically significant difference (p ,05) between Socialization, Education, Recreation, and Vocation domain ratings for normal and Developmentally Handicapped subjects. 8) There will be a statistically significant difference (p <. .05) between the overall QOL ratings for male and female adolescents. CHAPTER III METHODOLOGY
The focus of this research was on exploring the feasibility of developing a questionnaire that would measure the Quality of Life (QOL) of Developmentally Handicapped and normal adolescent populations. This study investigated the development of the QOL Questionnaire and its scoring system. The content and format of the questionnaire was based on QOL indices and adaptive behavior measures already in existence. This study specifically examined the internal reliability of the questionnaire and the four life domains of which it is composed, as well as the ability of the questionnaire to differentiate between the two research samples based on domain- specific and overall QOL ratings.
SUBJECTS This study examined the QOL for 235 adolescents divided into normal (n= 184) and Developmentally Handicapped (n= 51) populations. Both groups ranged in age from 14-19 years. The students were enrolled in grades nine through twelve at three public high schools in the South-Western City School District in Grove City, Ohio. The three high schools that participated in this study were Westland, Franklin Heights, and Grove City. The first group of subjects consisted of 51 students (27 boys and 24 girls) currently
47 48
receiving special education services through the Developmentally Handicapped (DH) program. Each DH student had been previously assessed and found to meet the qualification requirements for placement in this program according to the child's current functioning level in regard to IQ, achievement, and adaptive behavior. The IQ level of the sample ranged from 55 (mildly retarded) to 80 (borderline). The ages and sex of the students in the DH sample were as follows: 14-year-olds consisted of 1 boy and 3 girls, 15-year- olds consisted of 8 boys and 6 girls, 16-year-olds consisted of 5 boys and 5 girls, 17-year-olds consisted of 6 boys and 7 girls, 18- year-olds consisted of 3 boys and 5 girls, and 19-year-olds consisted of 1 boy and 1 girl. The mean age of the DH sample was 16.80 years (SD=1.33 years). Group characteristics for the DH sample according to sex and age are listed in Table 1.
Table 1 Characteristics of DH Group by Age (in years) and Sex
"age ! 1T~75 feT ?7 Ts i~9 SEX: Girls n= 3 6 5 7 5 1
Boys n= 1 8 5 6 3 1
TOTAL n= 4 14 10 13 8 2 49
The second sample of students consisted of 184 students enrolled in regular education English classes. The regular education sample included 92 boys and 92 girls. The ages and sex of the students in the normal sample were represented as follows: 14- year-olds consisted of 2 boys and 5 girls, 15-year-olds consisted of 16 boys and 19 girls, 16-year-olds consisted of 26 boys and 22 girls, 17-year-olds consisted of 23 boys and 22 girls, 18-year-olds consisted of 23 boys and 21 girls, and 19-year-olds consisted of 2 boys and 3 girls. Group characteristics for the normal sample according to sex and age are listed in Table 2. The mean age of the normal sample was 17.00 years (SD=1.20 years).
Table 2 Characteristics of Normal Group by Age (in years) and Sex
AGE: 14 15 16 17 18 19 SEX: Girls n = 5 19 22 22 21 3
Boys n = 2 16 26 23 23 2
TOTAL n = 7 35 48 45 44 5 50
The information obtained from all 184 students of the normal sample were used when determining the internal reliability of the QOL Questionnaire. However, for comparisons of QOL ratings between groups, 51 of the 184 students in the normal population were selected based on similar characteristics of chronological age, sex, and race with the 51 students in the DH population. This study is exempt from review by the Ohio State University Human Subjects Review Committee based on Categories 1 and 2 in Appendix C of the "Program Review For Research, Development, and Related Activities Involving Human Subjects, Part II: Guidelines for Program Reviews" (1988). The portion of the guidelines that exempt this study from review are listed in Appendix C. According to these same guidelines, the design of this study allowed the researcher to conduct her study without obtaining individual parent permission forms. A letter was sent home to the parents of both the DH and regular education students explaining the purpose of the study, the role their child would play in the study, the time commitment required, and the guarantee of confidentiality. (Please see Appendix A). Parents were encouraged to call if they had any concerns, or if they did not want their child to participate in the study. A permission form was not required for participation in this study since the entire classroom of regular education English students and the entire classroom of DH students were included in the study. Those who did not participate in the study voluntarily chose to be 51
omitted from the sample. The requirement of a permission form was waived due to the fact that no student would be identified in any way by the information they provided. An assent form, as recommended by the OSU Human Subjects Review Committee, was utilized even though it was not required for this type of study. Each student who participated in the study signed and dated an assent form confirming his or her voluntary participation in the study. Permission to conduct this study within the South-Western City School District was obtained from Dr. Betty Reiss, Chief Psychologist; Ms. Ann Horner, Coordinator of the Developmentally Handicapped program; and Mr. Bob Rhinehart, Director of Personnel Services. The South-Western City School District was selected as the research site based upon the large population of Developmentally Handicapped adolescents being served by the district.
INSTRUMENT The QOL Questionnaire involves the completion of 80 questions evaluating four specific life domains of adolescents. This instrument defines QOL according to the four life domains of socialization, recreation, education, and vocation. A domain score is determined for each of the four domains by summing the ratings of the individual items in each domain. An overall index of QOL is obtained by summing the four domain scores. 52
Questionnaire development. The four life domains of socialization, recreation, education, and recreation were selected for this QOL questionnaire based upon those life domains most commonly identified in the literature as significantly influencing QOL (Flanagan, 1977; Wilkening & McGranahan, 1978; Campbell, 1976; McKennel & Andrews, 1983; Evans, et al., 1985; Schuessler & Fisher, 1985; and Franklin, et al., 1986). Literature describing the development, changes, interests, and difficulties experienced by adolescents (Csikszentmihalyi & Larson, 1984; Sebald, 1984; Forisha-Kovach,1983; and Gallagher & Harris, 1958 ) was used to identify the life domains most important to the adolescent population. The literature cited above was also used as a basis for the development of the 80 items on the questionnaire. However, since the existing QOL questionnaires were developed using normal populations, items for this questionnaire also were identified using the Vineland Adaptive Behavior Scales (Interview Edition) developed by Sparrow, Balia, and Cicchetti (1984) and the AAMD Adaptive Behavior Scale (Nihira, et al., 1974) in order to more appropriately measure topics germane to the DH population. Other sources (Rodgers, 1977; Fletcher, 1979; Pratt, et al., 1980; Hill, et al., 1984; and Gersten, et al., 1986) were employed to identify items that significantly influence QOL for the DH population. The Bradburn Affect'Balance Scale (Bradburn, 1969) was used as a resource in the development of the subjective QOL questions of the index. 53
An analysis of the reading level of the QOL Questionnaire was performed by reading clinic staff of the Huelsman-Peters Psychoeducational Clinic at The Ohio State University. Results of this analysis indicate that the items of the QOL Questionnaire are written at approximately a sixth grade reading level. An additional investigation was conducted using The Living Word Vocabulary (Dale & O'Rourke, 1981) to determine the degree of difficulty in the comprehension of particular words according to reading level. The Living Word Vocabulary rates a word according to the percentage of individuals reading at a particular grade level who would understand the meaning of the word when it was read. Words on the QOL Questionnaire had to be rated as being understood by 90% of individuals reading at the sixth grade level in order to remain on the questionnaire. If the word did not meet this criteria, it was omitted and replaced by a word of similar meaning which was rated as being understood by 90% of individuals reading at a sixth grade level. These analyses were done in order to guarantee a measure written at a sixth grade reading level in order to minimize possible reading and comprehension difficulties for the DH population. A pilot study was conducted prior to the administration of the questionnaire to the two research populations. The purpose of this pilot study was to determine the clarity of the directions and to identify any difficult, or inappropriate items. The entire questionnaire was given to a sample of 6 regular education sixth graders and 6 developmentally handicapped eighth graders. The 54
questionnaire was administered in a group setting as it was designed. The regular education students completed the questionnaire within 10-20 minutes while the DH students took approximately 15-30 minutes to complete the questionnaire. Following completion of the questionnaire, the students were asked about the clarity of the directions, the appropriateness of the reading level, and to identify any unfamiliar words and/or questions that were not applicable to them. The result of this pilot study indicated that the directions for answering the questionnaire were sufficient and that there was no reported difficulty in reading level, or in comprehension of the material. The need for additional identification information to be included on the front page of the questionnaire was identified as a result of the pilot study.
Questionnaire format. The administration guidelines are located on the front page of the questionnaire. The students are instructed to answer both the subjective and objective questions on a semantic differential type of rating with "A lot", "A little", or "Not at all" as possible response choices. The adolescent is to circle their response following each question. The three response choices are printed to the immediate right of each question. The front page of the questionnaire requires the individual to circle their age, grade, sex, race, and high school they attend. The students were also asked to supply their date of birth and the date of testing on the front page in order to compute their chronological age. 55
The questionnaire is composed of 160 inquiries into the recreation, socialization, education, and vocation life domains of adolescents. There are a total of 80 yoked questions with each domain consisting of 20 yoked questions. The first inquiry for each of the 20 questions is subjective in nature while the second inquiry of the yoked pair is objective in nature. Each subjective inquiry was developed to identify the need, and each objective inquiry was developed to identify the importance or satisfaction of the need, for 20 different items in each of the four domains. The subjective questions are designed to measure such things as the importance of a particular situation or activity, the degree of enjoyment an activity provides, or the ability to perform a specific skill. The set of objective questions evaluate the opportunity to participate in activities and to practice skills. Each subjective question is followed by an objective question in order to more accurately rate the overall level of satisfaction of the item. The 80 items, as presented on the QOL Questionnaire, are listed in Appendix B.
PROCEDURE The QOL Questionnaire was administered in a group setting for both the normal and DH students. For both groups, the study began with an introduction of the researcher by the classroom teacher. The researcher then explained to the students that she had developed a questionnaire that attempted to identify the interests and 56
activities of adolescents in the areas of socialization, education, recreation, and vocation. They were told that the questionnaire consists of 80 items and that it would take 15-20 minutes to complete. The students were informed that they did not have to participate in the study and that if they chose not to participate it would not effect their grade in the class in any way. The QOL Questionnaire was then distributed to all of the students in the classroom by handing the first student in each row enough QOL Questionnaires for the students seated in their row and asking them to pass them back. The students were then asked to fill in the demographic information on the first page of the answer sheet. Following completion of the demographic information, the directions for answering the QOL Questionnaire were read aloud to the class as follows: "Please read each question and mark your answer by circling: "A lot", "A little", or "Not at all". Both the DH and normal students were encouraged to ask questions if there was an item, or a particular word in an item, that they did not understand. The normal students read the QOL Questionnaire independently and worked at their own pace. They were instructed to bring the QOL Questionnaire up to the researcher when finished. As the normal students passed in the QOL Questionnaires, the meaning of an assent form was explained and they were asked to sign the assent form confirming their voluntary participation in the study. The administration of the QOL Questionnaire to the DH sample differed from the administration to the normal sample in that each 57
question on the QOL Questionnaire was read out loud by the researcher to the DH students. The DH students were encouraged to read the questions along with the examiner. A new question was only read to the group after everyone had responded to the previous question. Reading each question out loud provided the DH students the opportunity to concentrate on what was being asked, rather than focussing their attention and energy on deciphering the words in the question. When everyone had completed the QOL Questionnaire, the DH students were asked to pass them to the front of the room. The assent form was explained to the students and circulated through the room for the signatures of those who had participated.
Scoring system. The answers given to the subjective questions were given a numeric rating as folfows: "A lot" = 5, "A little" = 4, and "Not at all" = 3. The answers given to the objective questions were given a numeric rating as follows: "A lot" = 2, "A little" - 1, and "Not at all" = 0. (See Table 3).
Table 3 Value Ratings For Subjective and Objective Responses
A lot A little Not at all SUBJECTIVE 5 4 3 OBJECTIVE 2 1 0 58
In order to compute a total item rating, the value of the objective rating was subtracted from the value of the subjective rating. This formula was used to determine the total item rating for each of the 80 items. As an example, on the Recreation Domain, if an adolescent answered the subjective question "I like to go swimming" with the response "A lot", this would be assigned a rating of 5. If the child answered the objective portion of the item "I go swimming" with the response "A lot", this would be assigned a rating of 2. The objective rating (2) would then be subtracted from the subjective rating (5) to provide a total item rating of 3. The method of calculating total item ratings is presented in Table 4.
Table 4 Calculating Total Item Ratings
SUBJECTIVE OBJECTIVE Total Item Rating A lot Not at all 5-0=5 A lot A little 5-1=4 A little Not at all 4-0=4 A lot A lot 5-2=3 A little A little 4-1=3 Not at all Not at all 3-0=3 Not at all A little 3-1=2 A little A lot 4-2=2 Not at all A lot 3-2 = 1 59
This method of determining total item ratings was based on the writings of Witkin (1984) in describing methods for setting priorities from survey data when using multiple data sets. This method follows the discrepancy formula of "what should be minus what is equals need" (Witkin, 1984, p. 212). In this case, what should be, is represented by the subjective questions; what is, is represented by ratings of the objective questions; and need is represented by the total item ratings. The value of the total item ratings ranges from 1 to 5. Very low (1) or very high (5) scores represent a low level of satisfaction in regard to level of importance of need and the degree to which the need is being met. A rating of 3 reflects high satisfaction, indicating that the degree of importance is commensurate with the degree of satisfaction. A total item rating of 2 or 4 indicates a medium level of overall satisfaction. A rating of 5 or 4 are of slightly greater concern than a rating of 1 or 2, as these values identify a greater discrepancy within an item in which the need is not being satisfied to the same degree as the importance placed on the need. Table 5 provides a description of the level of satisfaction according to all possible rating response combinations. 60
Table 5 LEVEL OF SATISFACTION ACCORDING TO RESPONSE COMBINATIONS
SUBJECTIVE A lot A little Not at all .OBJECTIVE A lot High Medium Low A little Medium High Medium Not at all Low Medium High
Domain scores are computed following the calculation of the 80 total item ratings. The score for Domain I is determined by summing the total item ratings for questions 1-20. Domain II is based on the sum of the total item ratings of questions 21-40. Domain III is the sum of the total item ratings of questions 41-60, while Domain IV reflects the sum of the total item ratings of questions 61-80. The four domain scores were calculated using the same method for both the DH and normal group. A total QOL score was calculated for both groups by summing the four domain scores.
ANALYSIS OF DATA Internal reliability. The internal consistency reliability of the questionnaire was assessed by computing a split-half correlation coefficient and then applying the Spearman-Brown formula (Salvia & Ysseldyke, 1981) to correct the correlation coefficient (see figure 61
1). The halves were divided into the even and odd questions in each of the four domains. Internal consistency coefficients were computed for each of the four domains as well as the for the overall QOL rating for both the normal and the DH groups. Fisher’s transformation to z. (Guilford and Fruchtner, 1987) was used to test the significance of the difference between the uncorrelated reliability coefficients of the two groups (see figure 2).
l*xx = 2 x r(i/2)(i/2)
1 + r(i/2)(i/2)
rXx: corrected correlation coefficient
r{i/2)(i/2)*- split-half correlation coefficient
Figure 1 Spearman-Brown Correction Formula
z = / ri - r2
\\ J J / - Ni * -3 — + — N2L- - 3
Figure 2 Fisher's Transformation to Z Formula for Uncorrelated Coefficients 62
Mean differences. The 51 DH students were matched according to age, sex, and race to 51 students selected from the 184 total students in the normal sample. The mean age of the DH group was 16.80 years (SD= 1.33 years) and the mean age of the normal group was 17.0 years (SD= 1.20 years). Responses to the questionnaire for both groups were evaluated according to the scoring criteria in order to obtain four domain scores and a total raw score. The mean total raw scores for the two groups were 249.57 (SD= 11.79) for the DH and 253.33 (SD= 8.161) for the normals. A two-factor repeated measures Analysis of Variance (ANOVA) was performed to identify any significant difference between normals and the DH sample in overall mean rating of QOL. The ANOVA was also performed to identify significant differences between the mean total domain raw scores of the socialization, recreation, education, and vocation domains for the DH and normal groups.
Additional analyses. Factor analysis was conducted in order to support the logical organization of the QOL Questionnaire. Factor analysis was conducted employing the Statview 512+ statistical software. The factor extraction method selected was principal components, with the number of factors to extract set as three. Item-domain total correlations were also conducted to support the logical organization of the QOL Questionnaire. Based on the results of the factor analysis, comparisons were made in regard to the factorial similarity of the DH and normal samples. An investigation 63
of the logical organization of the scale based on the results of the factor analysis as well as item-domain total correlations was explored. CHAPTER IV RESULTS
This study aimed to examine the feasibility of developing an instrument to measure the Quality of Life of Developmentally Handicapped and normal adolescents. The research hypotheses focused on the investigation of the internal reliability and group differences of the QOL Questionnaire. This chapter describes the results of the statistical analyses as they relate to the proposed hypotheses.
COMPUTATION OF INTERNAL RELIABILITY Internal consistency reliability coefficients were obtained using the split-half method of estimating reliability. The QOL Questionnaire was divided into two halves using the odd-even technique (Guilford & Fruchtner, 1987). The split-half method was used to determine both domain and total test internal reliability coefficients. In calculating the total test internal reliability coefficient, the two halves consisted of all the odd and all the even items from Domains I, II, and III. The internal reliability coefficients reported in this study were obtained by applying the Spearman-Brown correction formula (Aiken, 1988) to the calculated split-half internal reliability coefficient. The sam e procedure was
64 65
followed for estimating the internal consistency reliability for both the normal and Developmental^ Handicapped groups.
CRITERIA FOR RELIABILITY COEFFICIENTS Anastasi (1982) states that the desirable level for reliability coefficients is usually recommended as coefficients which fall in the .80s or .90s. Nunnally (1978) and Salvia and Ysseldyke (1981) recommend a reliability coefficient of .90 as a minimum standard when employing test scores to make important educational decisions such as class placement. Bracken (1987) also recommends an internal consistency criterion of .90 as an acceptable standard and suggests that subtests require an internal consistency criterion of .80. Salvia and Ysseldyke (1981) indicate that an exception to the .90 criterion is made when an instrument is used as a screening measure and suggest a minimum reliability of .80 as acceptable for screening instruments. Due to the fact that the Quality of Life Questionnaire is designed to be used more like a screening instrument than a diagnostic or placement measure, the reliability criterion recognized as adequate in this study is .80 for total test reliability, and .70 for subtest (or life domain) reliability.
HYPOTHESIS ONE The domains of the QOL Questionnaire (Socialization Domain, Education Domain, Recreation Domain, and Vocation Domain) will have adequate (r > .70) internal reliability. 66
Based on the acceptable reliability criteria outlined above, one of the four domains of the QOL Questionnaire has adequate internal reliability for normal subjects. Domain III (education) has adequate internal reliability with a coefficient of .71. Domain II (recreation) has a slightly lower internal reliability coefficient of .65. The Domain I (socialization) internal reliability coefficient of .45, and the Domain IV (vocation) coefficient of .30 are quite low. One possible difficulty influencing the low internal reliability of the Vocation Domain is that the items were often not applicable to the students not old enough to work. In these cases, the students circled the same response of "Not at all" to all of the items in Domain IV. Based upon the responses of both groups of students on Domain IV, as well as upon the reliability coefficients obtained for both groups of students for Domain IV, it appears that an evaluation of the vocational aspect of the lives of adolescents is not applicable to a significant portion of this population. As a result of these findings, scores on Domain IV were excluded from the rest of the analysis of the QOL Questionnaire. Therefore, the total test score of the QOL Questionnaire reported for both normals and Developmentally Handicapped, reflects a sum of the domain total scores of Domain I, Domain II, and Domain III. (See Table 6).
HYPOTHESIS TWO The QOL Questionnaire will have adequate (r s. .80) internal reliability for normal subjects. 67
The QOL Questionnaire does not have adequate internal reliability for normal subjects. The total test reliability coefficient of .75 for normals falls somewhat lower than the recommended level of .80 for adequate reliability. (See Table 6).
HYPOTHESIS 7THREE The domains of the QOL Questionnaire (Socialization Domain, Education Domain, Recreation Domain, and Vocation Domain) will have adequate (r .70) internal reliability for Developmentally Handicapped subjects. Two of the four domains on the QOL questionnaire have adequate internal reliability for Developmentally Handicapped subjects. Domain IV (vocation) has a very low internal reliability coefficient of .31. Domain I (socialization) has a good internal reliability coefficient of .67 which falls slightly below the recommended level of .70 as an adequate level of reliability. Both Domain II (recreation) and Domain III (education) have adequate internal reliability with coefficients of .70 and .74, respectively. (See Table 6).
HYPOTHESIS FOUR The QOL Questionnaire will have adequate (r > .80) internal reliability for Developmentally Handicapped subjects. The QOL Questionnaire does have adequate internal reliability for the Developmentally Handicapped with an internal reliability coefficient of .85. (See Table 6). 68
HYPOTHESIS FIVE There will be a statistically significant difference (p .05) between internal reliability of the QOL Questionnaire for normal and Developmentally Handicapped subjects. Fisher's transformation to z. (Guilford and Fruchtner, 1987) was used to test the significance of the difference between the uncorrelated reliability coefficients of the two groups. Results (z. = 1.174) indicate that no significant difference exists between the reliability coefficients for normals (.75) and the Developmentally Handicapped (.85).
Table 6 SPEARMAN-BROWN CORRELATION COEFFICIENTS
Domain I Domain II Domain III Domain IV Total Socialization Recreation Education Vocation < I - III)
DH .67 .70 .74 .31 .85 (n = 51)
Normals .45 .65 .71 .30 .75 (n « 184) TOTALS .51 .67 .74 .30 .79
HYPOTHESIS SIX There will be a statistically significant difference (p .05) between overall QOL ratings of normal and Developmentally Handicapped subjects. 69
A two-factor repeated measures Analysis of Variance (ANOVA) was performed to identify any significant difference between normals and Developmentally Handicapped in overall rating of QOL. The Scheffe F-test calculated an E-value of 13.88 which is significant at the .05 level. This indicates that normals and Developmentally Handicapped students do differ significantly in their rating of overall QOL. The mean total QOL rating for the Developmentally Handicapped group was 188.53 fSD = 9.33), and the mean total QOL rating for the normal group was 193.35 fSD = 7.83). The results of the ANOVA are listed in Table 7.
HYPOTHESIS SEVEN There will be a statistically significant difference (p .05) between Socialization, Education, Recreation, and Vocation domain ratings for normal and Developmentally Handicapped subjects. A significant difference was obtained in two of the four domains when comparing the domain ratings for the Developmentally Handicapped and normal subjects using a factorial ANOVA. Ratings by the two groups on Domain I (socialization) did not differ significantly (E = .279). A significant difference did not exist between the two groups on Domain IV (vocation) ratings (E = .026). However, significant differences did exist in the QOL ratings of Domain II (recreation) and Domain III (education) for Developmentally Handicapped and normals with E-ratios of 6.186 and 18.660, respectively. The E-ratios for the recreation and education domains are significant at the .05 level. 70
For both of these domains, the normals had higher evaluations of QOL than the Developmentally Handicapped. On the recreation domain, the normals had a mean QOL rating of 63.92 and the Developmentally Handicapped had a mean rating of 62.49. On the education domain, the normals had a mean QOL rating of 66.92 and the Developmentally Handicapped had a mean rating of 63.84. The £- values and mean ratings for each of the four domains are listed in Table 7.
Table 7 ANALYSIS OF VARIANCE RESULTS
Domain I Domain II Domain III Domain IV Total Socialization R ecreation Education Vocation (M il)
Normals (n =51)
X 62.51 63.92 66.92 59.98 193.35 SD 3.27 3.69 4.42 2.95 7.83
DH (n = 51)
X 62.22 62.49 63.84 60,00 188.53 SD 4.12 3.44 4.91 2.80 9.33
Scheffe F .28 6.19* 18.66* .03 13.88*
* E-ratios significant at .05 level 71
HYPOTHESIS EIGHT There will be a statistically significant difference (p .05) between the overall QOL ratings for male and female adolescents. No significant gender differences were identified when comparing overall ratings of QOL for males and females. No significant differences between sexes were found for the Developmentally Handicapped (t = .758), normals (i = -.151), or the combined sample of Developmentally Handicapped and normals (1 = .513). The results of the T-tests for identifying gender differences in the evaluation of QOL are listed in Table 8.
Table 8 GENDER DIFFERENCES IN OVERALL QOL RATING
Females Males
* SD m L Normals 193.35 7.17 192.96 8.46 -.151 (n = 92) (n = 92)
DH 187.89 8.18 189.25 10.61 .758 (n = 24) (n - 27)
Total 192.41 7.78 192.19 9.02 .513 (n = 116) (n = 119) 72
ADDITIONAL ANALYSIS What is the factorial similarity between normal and Developmentally Handicapped subjects? The results of the 60-item (Domains I, II, and III) principal components factor analysis for the Developmentally Handicapped and normals appear different. In both instances, following the orthogonal transformation of the unrotated factors, two dominant factors emerged. However, the distribution of significant loadings on the two factors differed between groups. For the normal group, the first five items of the QOL Questionnaire loaded significantly (>. .35) on the second factor, with items 1 and 2 also loading significantly (although to a lesser degree) on the third factor. Items 1 and 2 are the only two items that significantly load on the third factor. The rest of the items, items 6-60, had significant loadings on the first factor. (See Table 9). The principal components factor analysis for the 60 items of the Developmentally Handicapped group also revealed significant loadings (> .35) on three factors, with two of the factors being more dominant than the third. The highest significant factor loadings for each of the items is presented in Table 11. Items 7, 11, 23, 25, 26, 29, 40, 42, 46, 47, 48, 51, 52, 54, 56, 57, and 59 significantly load on factor one. Factor Two is composed of significant loadings by items 9, 14, 21, 33, 38, 53, and 60. And Factor Three shows significant loadings by items 8, 10, 17, 18, 24, 27, 31, 32, 35, 36, 39, 49, and 53. The method of presenting only the highest factor loadings to gain greater clarity for interpretation is outlined by 73
Rummel (1970) and followed here in the presentation of the results of the factor analysis.
Is the QOL Questionnaire organization based on logical categories supported by factorial analyses for normal subjects? The results of the factor analysis does not provide supporting evidence that the QOL Questionnaire is based on logical categories. The factor analysis for the normal sample identified two strong factors, with the first factor being dominant. These findings do not support the existence of three logical categories (the socialization, recreation, and education domains) on which the QOL Questionnaire is based. The highest significant factor loadings of the factor analysis for the normal group are listed in Table 9. However, the item-domain total correlations calculated for all 80 items (Domains I, II, III, and IV) for the normal subjects does support the logical organization of the QOL Questionnaire. A pattern which supports the existence of all four domains is evident when analyzing the results of the item-domain correlations. The highest significant loadings of the item-total correlations are listed in Table 10. Seventeen of the 20 items comprising Domain I show significant item-domain total correlations. Of these 17 items on Domain I, 15 items significantly correlate with Domain I, while the other two items significantly correlate with Domains III and IV. In Domain II, 17 of the 18 items with significant correlations do correlate with Domain II. All 20 items of Domain III show 74 significant correlations with Domain III and no other domain. All 11 items of Domain IV with significant item-domain total correlations do correlate with Domain IV and no other domain. The item-domain total correlations for each of the 80 items is listed in Table 10.
Table 9 FACTOR ANALYSIS FOR NORMALS (n-184)
FACTOR 1 FACTOR 2 FACTOR 3
1 - .564 - 2 - .593 - 3 - .665 - 4 - .54 - 5 - .453 - 6 .424 -- 7 .506 - - 8 .673 -- 9 .664 -- 10 .718 -- 1 1 .602 -- 1 2 .766 - - 13 .721 -- 14 .832 - - 15 .858 -- 16 .879 -- 17 .843 -- 18 .902 -- 19 .902 -- 20 .948 -- 21 .938 -- 22 .940 -- 75
Table 9 (continued) FACTOR ANALYSIS FOR NORMALS (n =184)
FACTOR 1 FACTOR 2 FACTOR 3 23 .970 - - 24 .914 -- 25 .954 -- 26 .950 -- 27 .948 - - 28 .964 -- 29 .968 -- 30 .963 -- 31 .973 -- 32 .973 - - 33 .989 -- 34 .983 - - 35 .991 - - 36 .980 - - 37 .986 -- 38 .988 -- 39 .981 - - 40 .982 -- 41 .960 - - 42 .972 -- 43 .978 -- 44 .975 -- 45 .974 - - 46 .968 -- 47 .984 -- 48 .984 - - 49 .988 - - 50 .994 -- 51 .986 - - 52 .989 -- 53 .989 - - 54 .991 -- 55 .991 -- 56 .991 -- 57 .990 - - 76
Table 9 (continued) FACTOR ANALYSIS FOR NORMALS (n=184)
FACTOR 1 FACTOR 2 FACTOR 3 58 .991 59 .994 60 .994
Factor loadings of >. .35 (significant at .01) are reported
Table 10 ITEM-DOMAIN CORRELATIONS FOR NORMALS (n = 184)
Domain I Domain II Domain III Domain IV Socialization Recreation Education Vocation Item s (1-20) (21-40) (41-60) (61-80) 1 .190 - - - 2 .375 - -- 3 .353 - - - 4 .399 - - - 5 .382 --- 6 .281 --- 7 .442 - -- 8 .229 --- 9 .297 - - - 10 - - - - 1 1 .428 - -- 1 2 --- .220 13 --- - 14 .341 --- 15 .285 - -- 1 6 .308 -- - 17 .409 --- 1 8 .444 --- 19 - - .244 - 20 ---- 21 - .296 -- 7 7
Table 10 (continued) ITEM-DOMAIN CORRELATIONS FOR NORMALS (n =184)
Domain I Domain II Domain II Domain IV Socialization Recreation Education Vocation Items (1-20) (21-40) (41-60) (61-80) 22 - .348 23 - .376 24 - .384 25 - .366 26 - .333 27 - .479 28 - .421 29 - .413 30 - .537 31 3 2 - .462 33 - .190 34 - .356 35 - - .248 36 - .429 37 - .429 38 39 - .367 40 - .474 41 - - .369 42 - - .228 43 - - .389 44 - - .534 45 - - .394 46 - - .484 47 - - .513 48 - - .505 49 - - .323 50 - - .410 51 - - .497 52 - - .296 53 - - .268 54 - - .464 55 - - .258 56 - - .417 7 8
Table 10 (continued) ITEM-DOMAIN CORRELATIONS FOR NORMALS (n =184)
Domain I Domain II Domain III Domain IV Socialization R ecreation Education Vocation Item s (1-20) (21-40) (41-60) (61-80) 57 - - .336 - 58 - - .315 - 59 -- .267 - 60 -- .221 - 61 - -- .341 62 --- - 63 - - - .257 64 - - - .200 65 - - - - 66 - -- .285 67 - - -- 68 - -- .367 69 - --- 70 - - - .363 71 - - - .404 72 - - - - 73 ---- 74 -- - - 75 --- .194 76 --- .424 77 - - - .392 78 - - -- 79 - --- 80 - - - .241
Correlations .191 (significant at .01) are reported 79
Is the QOL Questionnaire organization based on logical categories supported by factorial analyses for Developmentally Handicapped su b jects? Although the factor analysis of the QOL Questionnaire for the Developmentally Handicapped did identify three factors, the pattern of the factor loadings does not provide support for the pattern of item groupings of the three life domains. Therefore, the results of the factor analysis (located in Table 11) do not provide supporting evidence for the logical categorical organization of the scale. Results of the item-domain total correlations for the Developmentally Handicapped, however, do indicate a pattern which lends support to the existence of the four domains and the logical organization of the questionnaire. Table 12 illustrates the pattern of the highest significant coefficients of the item-domain total correlations. Nine of the 11 items from Domain I which have significant correlations do correlate with Domain I. All 11 of the Domain II items with significant correlations share these correlations with Domain II and no other domain. Thirteen items of Domain Ell show significant correlations with Domain III and no other domain. Seven items of Domain IV reported significant correlations with Domain IV and no other domain. The item-domain total correlations for each of the 80 items for the Developmentally Handicapped is listed in Table 12. 80
Table 11 FACTOR ANALYSIS FOR DEVELOPMENTALLY HANDICAPPED (n = 51)
FACTOR 1 FACTOR 2 FACTOR 3 1 - _ - 2 - - - 3 --- 4 - - - 5 --- 6 - -- 7 .545 -- 8 _ - .454 g - .474 - 10 -- .482 1 1 .535 -- 1 2 --- 1 3 --- 14 - .610 - 15 --- 1 6 -- - 1 7 - - .469 1 8 -- .502 1 9 --- 20 - - - 21 - .376 - 22 --- 23 .561 - - 24 _ - .512 25 .564 -- 26 .581 - - 27 - - .403 28 -- - 29 .412 -- 30 -- - 31 - - .417 32 -- .483 33 - .590 - 34 - -- 35 -- .615 36 - - .454 81
Table 11 (continued) FACTOR ANALYSIS FOR DEVELOPMENTALLY HANDICAPPED (n = 51)
FACTOR 1 FACTOR 2 FACTOR 3 37 38 - .648 - 39 -- .602 40 .572 -- 41 - - - 42 .608 - - 43 --- 44 - - - 45 --- 46 .412 - - 47 .487 -- 48 .399 - - 49 -- .358 50 - - - 51 .498 -- 52 .418 - - 53 - .546 - 54 .556 - - 55 --- 56 .356 - - 57 .568 - - 58 --- 59 .621 -- 60 - .399 -
Factor loadings of > .35 (significant at .01) are reported
Table 12 ITEM-DOMAIN TOTAL CORRELATIONS FOR DH (n= 51)
Domain I Domain II Domain III Domain IV Socialization Recreation Education Vocation Items (1-20) (21-40) (41-60) (61-80) 1 2 82
Table 12 (continued) ITEM-DOMAIN TOTAL CORRELATIONS FOR DH (n= 51)
Domain I Domain II Domain III Domain IV Socialization Recreation Education Vocation Item s (1-20) (21-40) (41-60) (61-80) 3 .384 - - - 4 - - -- 5 ---- 6 .401 --- 7 .426 -- - 8 .391 --- 9 .441 -- - 1 0 .450 - -- 1 1 .520 - - - 12 ---- 1 3 - --- 14 -- -- 1 5 .388 --- 16 ---- 1 7 .392 - - - 18 -- .502 - 19 - .364 -- 20 ---- 21 ---- 22 - -- - 23 ---- 24 - - -- 25 --- .461 26 - .571 - - 27 - .441 -- 28 - .374 - - 29 - .573 -- 30 --- -
31 - -- - 32 - .513 - - 33 ---- 34 - - -- 35 - .623 - - 36 - .388 -- 37 - - -- 83
Table 12 (continued) ITEM-DOMAIN TOTAL CORRELATIONS FOR DH (n= 51)
Domain I Domain II Domain III Domain IV Socialization Recreation Education Vocation Items (1-20) (21-40) (41-60) (61-80) 38 - .366 39 - .549 40 - .503 41 - - .456 42 - - .675 43 - - .468 44 45 46 - - .604 47 - - .682 48 - - .419 49 - - .358 50 51 - - .517 52 - - .509 53 - - .485 54 - - .416 55 56 57 - - .528 58 59 - - .404 60 61 62 63 64 65 66 .369 67 68 .351 69 70 - 71 - - - .472 72 8 4
Table 12 (continued) ITEM-DOMAIN TOTAL CORRELATIONS FOR DH (n= 51)
Domain I Domain II Domain III Domain IV Socialization Recreation Education Vocation Item s (1-20) (21-40) (41-60) (61-80) 73 ---- 74 - --- 75 ---- 76 - -- .470 77 - - - .489 78 --- 79 --- .396 80 - -- .375
‘Correlations > .354 (significant .01) are reported CHAPTER V DISCUSSION
The purpose of this study was to examine the feasibility of developing a questionnaire to measure the quality of life for Developmentally Handicapped and normal adolescents. By investigating the QOL of adolescents, information regarding the measurement of the QOL of a new population is being added to the QOL research literature. Because current QOL research is limited in regard to the definition and measurement of QOL for the mentally retarded, this study provides further support for the need to identify and develop a QOL measure for the mentally retarded. By identifying differences between normal and Developmentally Handicapped adolescents on QOL ratings, evidence is provided that the needs of the mentally retarded can be measured and that these needs are not adequately being met. By obtaining significant results in the statistical analysis of the QOL Questionnaire, further investigation into the development of a valid and reliable measure to evaluate the QOL of adolescents, especially mentally retarded adolescents, is w arranted.
SUMMARY OF THE STUDY The QOL Questionnaire consisted of 80 yoked items intended to evaluate subjective and objective ratings of the socialization,
85 86
recreation, education, and vocation life domains. The ratings of the socialization, recreation, and education domains were summed together to determine the overall QOL rating. The vocation domain ratings were not included in the overall QOL rating due to the low response rate to Domain IV. The QOL Questionnaire was given to a total of 235 students. Students were divided into two groups, those enrolled in regular education English classes (n= 184), and students enrolled in classes for the Developmentally Handicapped (n= 51). Internal reliability of the QOL Questionnaire, including both overall and domain-specific internal reliabilities, were computed. A principal components factor analysis was performed in order to investigate the logical organization of the scale, as well as to determine the factorial similarity of the questionnaire for the two samples. The Developmentally Handicapped and the normal samples were compared in order to identify any significant group differences between mean ratings of the four domains and between the mean overall QOL rating. Results of this study indicate that a significant difference does exist in the overall QOL rating between normal and Developmentally Handicapped adolescents. Normal subjects report a higher overall mean rating of QOL than the Developmentally Handicapped students. A significant difference was also found to exist between these groups in regard to mean QOL ratings for Domain li (recreation) and Domain III (education). On both domains, the 87
normal group reported higher mean ratings of QOL than the Developmentally Handicapped group. The QOL Questionnaire has adequate internal reliability for the Developmentally Handicapped sample as well as adequate internal reliability when both groups are combined. The internal reliability of the normal sample was slightly lower. However, no significant difference exists between the internal reliability of the normal and Developmentally Handicapped groups. Results of the factor analysis for both groups identify three factors. The pattern of the factor loadings, however, vary considerably between groups and do not support the existence of the individual domains for either group. Additional analysis, however, provide significant item-total domain coefficients which do support the logical organization of the QOL Questionnaire for both samples.
INTERNAL RELIABILITY OF THE FOUR LIFE DOMAINS FOR NORMAL AND DEVELOPMENTALLY HANDICAPPED SUBJECTS
N.Q.r.mais The first aim of this study was to determine the internal reliability of the four domains of the QOL Questionnaire for normal subjects. Domain III (education) is the only domain which has adequate (.70 or higher) reliability for normal subjects. The items 88
on the education domain reliably measure the educational activities and interests of adolescents. The poor reliability of Domain IV (vocation) may have been influenced by the fact that the vocation domain items were not applicable to those students who had not yet been employed. Items were not available to determine if this lack of work experience was by choice (which would reflect high satisfaction), or prohibited by age or some other factor (which would reflect low satisfaction). Students who had not been employed responded to all of the items on Domain IV by circling the response "Not at all". Another difficulty with Domain IV involved confusion as to whether students should answer the vocation items if they had once been employed, but were no longer working. These students were encouraged to respond to the items as they applied to the last position held. It is impossible to predict how many students with previous work experience answered "Not at all" to all of the domain items because they were not currently working. A similar difficulty was identified for two of the items on the socialization domain. The items in question on Domain I addressed the issue of driving and having a driver's license. These items were not applicable to at least 23% of the normal sample who are not of legal age to drive and were answered with a response of "Not at all". No differentiation was made between whether these items were not applicable by choice, or whether they were restricted due to age, lack of parental permission, or some other factor. 89
Developmental^ Handicapped Results of the internal reliability of the four domains of the questionnaire for subjects who are Developmentally Handicapped were similar to those of the normals. Domain III (education) and Domain II (recreation) have adequate internal reliability. The items of these domains reliably measure the importance and availability of educational and recreational activities of Developmentally Handicapped adolescents. As discussed in reference to the low internal reliability of Domain iV for the normal sample, the very low internal reliability for Domain IV for the Developmentally Handicapped group is also believed to be influenced by the fact that the items of this domain were not applicable to students who have not held a job. It would be important to know if the lack of work experience was by choice, or influenced by other factors such as age, lack of transportation, or lack of parental support and approval. A further difficulty lies in the fact that students who had worked previously, but were not currently employed, may not have responded to this part of the questionnaire. Also, further clarification needs to be made as to what defines having a job. For example, does babysitting, house cleaning, or delivering newspapers constitute a job? The lower reliability of Domain I (socialization) may be influenced by the items relating to driving and having a driver's license which where not applicable to at least 35% of the Developmentally Handicapped sample. The students responded to 90
both the objective and subjective parts of the items by circling "Not at all".
Conclusions The education domain has adequate internal reliability for both the normal and Developmentally Handicapped adolescents. In addition, the recreation domain also adequate reliability for the Developmentally Handicapped. The vocation domain has poor internal reliability for both groups. This low internal reliability is believed to be a result of little variation in item ratings by the students. By responding "Not at all" to both the objective and subjective part of the vocation domain items, students of both groups were obtaining an item value rating that reflected a high level of satisfaction, with no variation among item scores. Sattler (1988) reports that a test with little variation in scores will have low reliability. Domain IV (vocation) was omitted from the overall quality of life rating for all students since it was impossible to determine for which students the domain rating reflected a true measure of satisfaction with vocational experiences. The domain items investigating employment and transportation were included in this study due to the important role both play in the goal of achieving a sense of independence which is so highly valued and strived for by adolescents (Csikszentmihalyi & Larson, 1984; Berzonsky,1981; and Atwater, 1983). These findings indicate that further research needs to address the issue of assessing areas that 91
are important to the adolescent population, while accounting for the fact that the items may not be applicable to some adolescents due to age requirements or other restrictions. Because of the variation in the level of internal reliability estimated for the four life domains of both groups, it would be unwise to make evaluations of an adolescent's current QOL based on the evaluation of a single domain. Further investigations need to be made in order to determine the reason for the differences in the internal reliability of the domains. Once adequate levels of reliability had been obtained for the all of the domains, greater confidence could be placed in making evaluations of current life quality based on responses of a particular domain.
INTERNAL RELIABILITY OF THE QOL QUESTIONNAIRE FOR NORMAL AND DEVELOPMENTALLY HANDICAPPED SUBJECTS
Normals The second area of investigation focussed on the internal reliability of the QOL Questionnaire for normal subjects. The QOL Questionnaire has good reliability, however, it does not meet the minimum standard of .80 suggested for adequate reliability by Nunnally (1978), Salvia and Ysseldyke (1981), Bracken (1987), and Sattler (1988). However, because the internal reliability is 92
approaching the adequate level, this provides support for the use of the QOL Questionnaire as an instrument for measuring the importance and satisfaction of life domains of adolescents. Although there are some difficulties within the QOL Questionnaire that need to be identified and addressed, this instrument does have value as a reliable measure of QOL. It is possible that the overall QOL reliability could be improved by rewriting items that present difficulties, and by providing alternate response options for those items that are not applicable to the individual.
DevelopmentaHv Handicapped The QOL Questionnaire does have adequate internal reliability for Developmentally Handicapped subjects. Therefore, the QOL Questionnaire is a reliable measure of overall QOL for Developmentally Handicapped adolescents. Confidence can be placed in the evaluation of overall QOL as identified by the QOL Questionnaire. It is believed that further refinement, or possibly the omission of problem items, would help increase the internal reliability for the Developmentally Handicapped group.
Normals vs. ■Deveiopmentallv Handicapped An investigation was made to determine the similarity of the internal reliability estimates of the QOL Questionnaire for normal and Developmentally Handicapped subjects. Results indicate there is no significant difference between the reliability coefficients of the 93
two groups. These findings provide support for the use of the QOL Questionnaire as a reliable instrument to measure quality of life for both the normal and Developmentally Handicapped subjects.
Conclusions Although there was no significant difference between the reliability coefficients of the normals and Developmentally Handicapped, the Developmentally Handicapped did have a slightly higher reliability coefficient. A possible explanation for the slightly higher reliability coefficient of the Developmentally Handicapped group may be a function of the method in which the questionnaire was administered. For the Developmentally Handicapped subjects, administration involved every item on the questionnaire being read aloud to them. This practice was implemented to reduce difficulties that might arise from being unable to read the item and to allow the Developmentally Handicapped subjects to spend more time answering the question than struggling to read through the question. This administration procedure may have served a second function, in possibly improving the probability that when responding, the same amount of time and consideration would be given to each item on the questionnaire. The time spent on the response to each item was not controlled for in the normal sample where the students read the questionnaire independently and finished on an individual basis. Thus, in a desire to finish quickly, some students may not have thoroughly read all of 9 4
the items before responding, or they may have simply responded the same way to both the subjective and objective questions without considering the difference between the two. Most importantly, the internal reliabilities reported for the domains and overall QOL Questionnaire indicate that the overall QOL rating should be used to evaluate current QOL. For both groups, the individual domain reliabilities had lower coefficients in comparison to the reliability coefficients of the overall questionnaire. The overall QOL rating is therefore recommended for use in interpreting QOL, rather than making inferences based on the ratings of any of the individual domains.
FACTOR ANALYSIS OF THE QOL QUESTIONNAIRE FOR NORMAL AND DEVELOPMENTALLY HANDICAPPED SUBJECTS The third area of investigation evaluated the factorial similarity between normal and Developmentally Handicapped subjects. Factor analysis conducted for both groups were similar in that they identified three factors with two of the factors being more dominant. For the normal sample, the first two factors were most dominant, while for the Developmentally Handicapped, the first and third factors were the most dominant. The results of the factor analysis also differed in regard to which items had a significant loading on which factors. Only 17 of the 60 items on the QOL Questionnaire significantly loaded on the same factor (factor one) for both groups. 9 5
These differences in factor loadings may be influenced by the small sample size used in this study. Results of any factor analysis are directly related to the ratio between the number of items and number of variables. Rummel (1970) reports that a small case to variable ratio can limit the inferences that can be drawn from the results of the factor analysis. Cattell (1966) recommends a 4-to-1 rule of thumb to follow when determining the ratio of number of cases to number of variables. In this study, the normal population provides approximately a 2-to-1 ratio, while the ratio of the Developmentally Handicapped sample is less than a 1-to-1 ratio of cases to variables.
Conclusions Naming factors on the basis of the results of a factor analysis can be an ambiguous process which requires caution in the interpretation of results (Anastasi, 1982). Sattler (1988) warns that "the same set of data can yield different results depending on the factor analytic method used, the number of factors retained, and the rotations of the factors." (p. 34). Due to the differences among the factor loadings of the two samples, as well as the possible limitations introduced as a result of small sample size, the three factors identified through factor analysis will not be named. 9 6
THE LOGICAL ORGANIZATION OF THE QOL QUESTIONNAIRE FOR NORMAL AND DEVELOPMENTALLY HANDICAPPED SUBJECTS
Normals The fourth area of investigation examined whether the organization of the QOL Questionnaire was based on logical categories supported by factor analysis for normal subjects. The results of the factor analysis do not support the logical organization of the scale. The factor loadings do not provide support for the separate domains on which the scale is based. However, significant item-domain total correlations for the normal subjects do provide support for the four life domains which compose the QOL Questionnaire. The significant item-domain total coefficients provide evidence that the items do measure the life domain they were developed to evaluate. Further investigations need to be done to determine why some items significantly load on domains other than the one for which it was created.
Developmentally Handicapped The logical organization of the scale is not supported by the results of the factor analysis for Developmentally Handicapped subjects. The domains of the QOL Questionnaire are not supported by the factor loadings. However, significant item-domain total correlations do provide support for all four of the life domains on which the QOL Questionnaire is based. All of these items had 97
highest significant coefficients with the Domain for which they were created, thus supporting the existence of the four life domains.
Conclusions The lack of support of the logical categories of the QOL Questionnaire by the results of the factor analysis may possibly be due to the difficulties imposed by the small subject to item ratio as described previously. The fact that in each domain the normal sample had a larger number of significant item-domain total coefficients than the Developmentally Handicapped sample may possibly indicate that fewer items are applicable to the Developmentally Handicapped sample, or that some items do not have the same amount of importance for the Developmentally Handicapped sample. This hypothesis is supported by the fact that there are some items with significant coefficients for the normals but not for the Developmentally Handicapped, and some items (although fewer in number) with significant correlations for the Developmentally Handicapped but not for the normals. Further analysis should investigate the differences in item-total correlations for the two samples to identify which items are most appropriate for each sample in the measurement of QOL. 98
SIGNIFICANT DIFFERENCES BETWEEN OVERALL AND DOMAIN QOL • RATINGS FOR NORMAL AND DEVELOPMENTALLY HANDICAPPED SUBJECTS
Overall QQL .Rating The fifth area of investigation explored any significant differences between the overall QOL rating for normal and Developmentally Handicapped subjects. Results of the two-factor repeated measures Analysis of Variance indicates that a significant difference does exist between the overall QOL rating of normals and Developmentally Handicapped. The normal sample had a higher mean total QOL rating than the Developmentally Handicapped sample. This finding supports the need to develop and implement a QOL measure to serve as a needs assessment tool for the mentally retarded as suggested by Cheng, 1988; Landesman, 1986; Evans, et al., 1985; and Baker and Intagliata, 1982. As a needs assessm ent tool, deficit areas can be identified and incorporated into program plans (Cheng, 1988).
Domain QOL Ratings A two-factor repeated measures Analysis of Variance was again used to identify significant differences between groups for domain QOL ratings. Significant differences between the mean domain ratings were found to exist on Domain II (recreation) and 99
Domain III (education). For both domains, the mean ratings for the normal group were significantly higher than those of the Developmentally Handicapped. One possible explanation for the existence of a significant difference for the recreation domain may be found in the types and availability of the activities these domains explore. The recreation domain includes activities which require transportation, cost a fee, and may require parental permission. Each of these factors may hinder the opportunity of the Developmentally Handicapped to participate since they are less likely to be able to provide their own transportation, to earn their own spending money, or to go places unsupervised. The education domain consists of items which measure functional living skills and participation in school activities. One explanation for the higher score on the education domain by normals may be that the normals are more likely to have learned and utilized the functional living skills and are more likely to participate in school activities such as sports teams and clubs.
Conclusions These findings support the development and use of the QOL Questionnaire as a method of measuring quality of life for normal and Developmentally Handicapped adolescents. As anticipated, this study found that the Developmentally Handicapped do differ from normals in their evaluation of QOL. QOL research needs to further investigate the reason for differences in QOL ratings and to explore 100
methods to eliminate these differences in order to provide the Developmentally Handicapped with the quality of life they are entitled.
GENDER DIFFERENCES IN OVERALL QOL RATINGS FOR NORMAL AND DEVELOPMENTALLY HANDICAPPED SUBJECTS The last area of investigation explored the existence of any gender differences in the evaluation of QOL. No significant differences exist between the QOL ratings of males and females in this study. These findings are congruent with those of Schalock, et al.p (1989) in which no gender differences were identified in the evaluation of QOL for the mentally retarded. These findings provide some evidence for the use of the QOL Questionnaire as an unbiased measure of life quality for male and female adolescents. These results also may provide support for the items of the questionnaire as being equally applicable to both sexes and that males and females do not differ significantly in their view of what composes life quality. A further investigation comparing actual item ratings by males and females would be valuable for identification of any gender differences for particular items. 101
LIMITATIONS OF THIS STUDY The small sample size used in this study limits the interpretive value of the results of the factor analysis. As Cattell (1966) points out, the recommended number of subjects needed to perform a factor analysis is 4 times the number of items on a questionnaire or survey. The size of the samples in this study were too small to interpret the results of the factor analysis with confidence. However, since this study was designed to be exploratory in nature, the information obtained from the factor analysis is still valuable. The intellectual skills of the Developmentally Handicapped may place limitations on the interpretation of the results of this study. Sigelman, Schoenrock, Winer, Spanhel, Hromas, Martin, Budd, and Bensberg (1981) point out that when using a self-report style of measure with the mentally retarded, biases of different natures can result. In regard to the intellectual level of the individual, limited cognitive skills may prevent the individual from being able to read the questionnaire. Or, if able to read the questionnaire, the individual may have limited comprehension of the items or topic presented for evaluation. The applicability of the QOL Questionnaire to individuals who are mentally retarded is limited to those individuals with a mild level of mental retardation. Items on this questionnaire, therefore, may not be applicable for individuals who are severely or profoundly retarded. Rosen (1986) points out that needs differ according to 102
level of functioning and stresses that QOL should be defined differently for those functioning more independently and at a higher intellectual level than for those living in an institution who are more severely handicapped and limited in intellectual ability. The generalizability of the results are limited as a result of the sample population being obtained from a very restricted geographic region. The sample does not represent minorities to a degree equivalent to that of the national population.
IMPLICATIONS FOR FUTURE RESEARCH Future studies should focus on the development and refinement of Quality of Life measures devoted specifically to individuals who are mentally retarded. Future investigations should further examine the reliability of both global and domain-specific measures. Reliability studies should focus on test-retest reliability to provide support for the questionnaire as a stable measure of Quality of Life, uninfluenced by the erratic emotional swings of an adolescent. Future research in the development of a QOL questionnaire should focus on the inclusion of a measure of an individual's current emotional state. A measure of affect should be used to determine how much an individual's current mood does or does not influence their rating of questionnaire items. Future research on Quality of Life measures should explore the relationship between QOL ratings and measured level of intelligence. More extensive exploratory factor analysis should be performed to eliminate items which do not 103
significantly contribute to the measurement of QOL. In future research, efforts should be made to provide the mentally retarded individual the opportunity to determine their own criteria for evaluating their Quality of Life. APPENDIX A
LETTERS TO PARENTS
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To: Parents of Westland students enrolled in English I, II, III, and IV From: Dr. Betty Reiss, Chief Psychologist Jocelyn Brown, Intern School Psychologist Date: May 15, 1990 RE: Consent for participation in a research study
As part of my research for my doctoral dissertation, I am developing a questionnaire that m easures the Quality of Life of Adolescents. The questionnaire involves 160 questions which asks about activities related to the education, recreation, socialization, and vocation activities of adolescents. The questionnaire takes about 15 minutes to complete and will be administered during English class. The students will not put their names on the questionnaire and will not be identified in any way by the answers that they give.
If you do not want your son or daughter to participate in this study, please contact me at 875-2318. Each student will be given the option to participate or to decline the opportunity. 106
To: Parents of students enrolled in Developmentally Handicapped C lasses From: Dr. Betty Reiss, Chief Psychologist Jocelyn Brown, Intern School Psychologist Date: May 15, 1990 RE: Consent for participation in a research study
As part of my research for my doctoral dissertation, I am developing a questionnaire that measures the Quality of Life of Adolescents. The questionnaire involves 160 questions which asks about activities related to the education, recreation, socialization, and vocation activities of adolescents. The questionnaire takes about 15 minutes to complete and will be administered during English class. The students will not put their names on the questionnaire and will not be identified in any way by the answers that they give.
If you do not want your son or daughter to participate in this study, please contact me at 875-2318. Each student will be given the option to participate or to decline the opportunity. APPENDIX B
QOL QUESTIONNAIRE
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QUALITY OF LIFE QUESTIONNAIRE
SEX: Male Female
RACE: White Black Hispanic Other
GRADE: 9th 10th 11th 12th
HIGH SCHOOL: Westland Franklin Heights Grove City
AGE: 14 15 16 17 18 19
TODAY'S DATE: ______
YOUR BIRTHDAY:______
This is a survey to find out things or activities you like. Please read each question and mark your answer by circling: "A lot", "A little", or "Not at all". 109
SOCIALIZATION
1) I like having at least one close friend ...... A little Not a t all Having at least one close friend Is important to me...... A little Not at all 2) 1 like having several triends ...... A littie N ot a t all Having several friends is important to me...... A little Not a t all
3) 1 like going to movies with friends ...... A little Not at all I go to movies with friends...... A little Not a t all 4) 1 tike going shopping with friends...... A lot A little Not a t all I go shopping with friends...... A little Not a t all
5) I like talking to friends on the phone ...... A little Not a t all I talk to friends on the phone...... A little Not a t all 6) 1 like having friends stay overnight ...... A little Not a t all I have friends stay overnight...... A little Not a t all
7) I like staying overnight with friends ...... A littie Not at all t stay overnight with friends...... A little Not at all B) I like writing letters to a friend ...... A little Not a t all I write letters to a friend ...... A little Not at all
9) I like going on double dates ...... A lot A little Not a t all I go on double dates ...... A little Not at all 10) I like going on single dates ...... A little Not a t all I go on single dates ...... A little Not a t all
11) I like driving a car...... A little Not a t all I drive a car...... A little Not at all 12) I like having my driver's license ...... A tittle Not at all Having my driver's license is important to me...... A little Not a t all
13} I like having chores to do at home ...... A little Not a t all I do chores at home ...... A little Not a t all 14) I like eating at a restaurant ...... A little Not at all I eat at a restaurant...... A little Not a t all
15) I like ordering a meal in a restaurant ...... A little Not at all I order a meal in a restaurant...... A little Not a t all 16) I like meeting new people...... A little Not at all I feel comfortable meeting new people...... A little Not a t all
17) I know how to read a newspaper...... A little Not at all I read a newspaper...... A little Not at all 18) I know how to use a phone book ...... A little Not at all I use the phone book ...... A little Not a t all
19) I know how to use a pay phone...... A lot A little Not a t ail I use a pay phone...... A little Not at all 20) I like using the public bus by myself...... A little Not at all I use the public bus by myself ...... A little Not at all 110
RECREATION
21) 1 like going swimming ...... A lot A little Not a t all 1 go swimming...... A lot A little Not at all 22) 1 like playing putt-putt...... A lot A little Not at all 1 play putt-putt...... A lot A little Not at all
23) 1 like playing video games...... A lot A little Not at all 1 play video games...... A lot A little Not at all 24) 1 like having a pet...... ,, A lot A little Not at all 1 have had a pet...... A lot A little Not at all
25) 1 like riding a bike ...... A lot A little Not at all 1 ride a bike ...... A lot A little Not a t all 26) 1 like going camping ...... A lot A little Not at all 1 go camping...... A lot A little Not at all
27) 1 like going to professional sports games...... A lot A little Not at all 1 go to professional sports games...... A lot A little Not at all 28) 1 like going to plays...... A lot A little Not a t all 1 go to plays...... A lot A little Not at all
29) 1 like going to the movies ...... A lot A little Not at all 1 go to the movies...... A lot A little Not at all 30) 1 like going to concerts of music groups...... A lot A little Not at all 1 go to concerts of music groups...... A lot A little Not at all
31) I like watching TV ...... A lot A little Not at all I w atch TV ...... A lot A little Not at all 32) 1 like watching movie videos ...... A lot A little Not at all 1 watch movie videos...... A lot A little Not a t all
33) 1 like listening to the radio ...... A lot A little Not at all 1 listen to the radio ...... A lot A little Not a t all 34) i like playing games with friends...... A lot A little Not at all 1 play games with friends...... A lot A little Not at all
35) 1 like listening to records/tapes of my favorite band/singer ...... A lot A little Not at all 1 listen to records/tapes of my favorite band/singer...... A lot A little Not at all 36) 1 like going to church youth activities ...... A lot A little Not at all 1 go to church youth activities...... A lot A little Not a t all
37) 1 like going to school youth activities ...... A lot A little Not a t all 1 go to school youth activities...... A lot A little Not at all 38) 1 like reading books/magazines for fun ...... A lot A little Not at all 1 read books/magazines for fun ...... A lot A little Not a t all
39) 1 like having a subscription to a magazine ...... A lot A little Not a t all 1 get subscriptions to magazines ...... A lot A little Not a t all 40) 1 like going bowling ...... A lot A little Not a t all 1 go bowling ...... A lot A little Not a t all 111
EDUCATION
41) I know how to live on my own ...... A little Not a t all School taught me how to live on my own...... A little Not at all 42) I know how to wash dishes ...... A little N ot a t all 1 wash dishes ...... A little Not at all
43) 1 know how to grocery shop...... A little Not a t all 1 go grocery shopping...... A littie Not at all 44) 1 know how to balance a checkbook ...... A little Not a t all 1 balance a checkbook ...... A little Not at all
45) 1 know how to open a savings account...... A little Not at all 1 save money in a bank account ...... A little Not at all 46) 1 know how to ride the public bus ...... A little Not a t all 1 ride the public bus ...... A little Not at all
47} 1 know how to wash my own clothes ...... A little Not at all 1 wash my own clothes ...... A little Not at all48) 1 know how to sew buttons and hems ...... A little Not a t ail 1 sew buttons and hems ...... A littie Not a t all
49) 1 know how to use the stove ...... A little Not a t all 1 use the stove...... A littie Not a t all 50} 1 know how to use the microwave ...... A little Not a t all 1 use the microwave...... A little Not at all
51) 1 know how to iron clothes ...... A little Not at all 1 iron clothes ...... A little Not a t all 52) 1know my phone number ...... A little Not a t all 1 phone my home...... A little Not a t all
53) 1 know how to write my address ...... A little Not at all 1 write my address ...... A little Not a t all 54) 1 like going to school sports games...... A little Not a t all 1 go to school sports games...... A little Not at all
55) 1 like being in a school club ...... A little Not a t ail 1 join school clubs ...... A little Not a t all 56) 1 like helping with the school play...... A little Not a t all 1 help with the school play...... A little Not at all
57) 1 like playing on a school sports team ...... A little Not at all 1 play on school sports teams...... A little N ot a t all 58) 1 like being in Special Olympics...... A little Not at all 1 am in S p ecial O lym pics...... A little Not a t all
59) 1 like going to school dances and/or parties...... A little Not a t all 1 go to school dances and/or parties...... A little Not a t all 60) 1 like playing in the school band ...... A little Not a t all 1 play in the school band ...... A little N ot a t all 112
VOCATION
61) 1 have had jobs ...... A lot A little Not a t all Having a job is important to me...... A lot A little N ot a t all 62) 1 like my job ...... A lot A little Not at all 1 enjoy what 1 do at my job ...... A lot A little N ot a t all
63) 1 picked where 1 wanted to work ...... A lot A little Not a t all Picking where 1 want to work is Important to me ...... A lot A little Not a t all 64) 1 have applied for a job...... A lot A little Not a t all 1 feel comfortable applying for a job ...... A lot A little Not a t all
65) 1 get help when filling out forms for a new job ...... A lot A little Not at all The amount of help 1 get when filling out forms for a new job is ...... A lot A little Not a t all 66) 1 like driving myself to work ...... A lot A little Not a t all 1 drive myself to work ...... A lot A little Not a t all
67) 1 like riding the bus to work ...... A lot A little Not at all 1 ride the bus to work ...... A lot A little Not a t all 68) 1 like walking to work ...... A lot A little Not at all 1 walk to work ...... A lot A little Not a t all
69) 1 like my parents taking me to work ...... A lot A little Not at all My parents take me to work ...... A lot A little Not a t all 70) 1 like working with my boss ...... A lot A little Not at all 1 work with my boss ...... A lot A little Not at all
71) 1 like working with others ...... A lot A little Not at all 1 work with others ...... A lot A little Not at all 72) 1 like working by myself ...... A lot A little Not a t all 1 work by myself ...... A lot A little Not at all
73) 1 like earning money ...... A lot A little Not at all 1 earn money ...... A lot A little Not a t all 74) 1 like my boss ...... A lot A little Not a t all 1 get along with my boss ...... A lot A little Not at all
75) 1 like the people 1 work with ...... A lot A little Not at all 1 get along with the people 1 work with...... A lot A little Not at all 76) 1 like the hours that 1 work ...... A lot A little Not at all 1 wish 1 could change Ihe hours that 1 work ...... A lot A little Not at all
77) 1 like the amount of money 1 earn ...... A lot A little Not at all 1 wish 1 could change the amount of money 1 earn ...... A lot A little Not a t all 78} 1 wait on customers ...... A lot A little Not at all 1 feel comfortable waiting on customers ...... A lot A little Not a t all
79) 1 have used a time clock at work ...... A lot A little Not at all 1 feel comfortable using a time clock ...... A lot A little Not at all 80) 1 have recorded my work hours on a time card ...... A lot A little Not at all 1 feel comfortable recording my work hours on a time card... A lot A little Not a t all APPENDIX C
ACTIVITIES EXEMPT FROM REVIEW BY OSU HUMAN SUBJECT REVIEW COMMITTEE
113 114
ACTIVITIES EXEMPT FROM REVIEW BY OSU HUMAN SUBJECT REVIEW COMMITTEE
Research activities in which the only involvement of human subjects will be in one or more of the following categories are exempt from review by an OSU Human Subject Review Committee.
1. Research conducted in established or commonly accepted educational settings, involving normal educational practices, such as:
a. research on regular and special education instructional strategies, b. research on the effectiveness of or the comparison among instructional techniques, curricula, or classroom management methods.
2. Research involving the use of educational tests (cognitive, diagnostic, aptitude, achievement), if information taken from these sources is recorded in such manner that subjects cannot be identified, directly or through identifiers linked to the subjects. REFERENCES
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