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M 4 . 4 ,.:"€ 4Q, 7 . 99770.1, 1 C 4" ‘ ' 144 114‘1‘ “7'1144’1 1117" 41 41“”‘vl 4, H- 1. - . . 4 1‘ 077.77777'7 17:71'54 C; 1 1.“ ' “(1-1117 1 "11:4 ‘C .-4 1' . . - 1 1 *1 11112111, .1’1‘1‘ 7 - “1'21 ""1 This is to certify that the thesis entitled Status and Needs Study Regarding Disabling Conditions and Rehabilitation Factors Present in Two Rural Districts of Costa Rica presented by Gaston de Mezerville has been accepted towards fulfillment of the requirements for Ph.D. Counseling, Personnel Services & Educational Psychology degreein ng 6-27 {f‘vm(/_\ / // Majg/éofessor 6/ Date May 10th, 1978 0-7639 STATUS AND NEEDS STUDY REGARDING DISABLING CONDITIONS AND REHABILITATION FACTORS PRESENT IN TWO RURAL DISTRICTS OF COSTA RICA By Gaston de Mezerville A DISSERTATION Submitted to , Michigan State University in partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY Department of Counseling, Personnel Services, and Educational Psychology 1978 Q31C/glébgfign ABSTRACT STATUS AND NEEDS STUDY REGARDING DISABLING CONDITIONS AND REHABILITATION FACTORS PRESENT IN TWO RURAL DISTRICTS OF COSTA RICA By Gaston de Mezerville For most developing countries, the need for providing adequate health and rehabilitation services to all of their citizens is clearly affected by the limited resources available to them for the accomplish- ment of this task. Costa Rica is not an exception. According to the Costa Rican National Council of Rehabilitation and Special Education, N.C.R.S.E., the existing resources in the field of rehabilitation are not enough to offer adequate services to more than 25% of the disabled population. Consequently, there is a need for adopting a more efficient and workable rehabilitation model in order to further diminish the impact of disability. The long-term purpose of this study, therefore, was to contribute to the development of such a model, by providing a description of the status and needs of a particular rural area in regard to disabling con- ditions and rehabilitation factors. The specific objectives of the study were (1) Identification of functional limitations and assessment of the different dimensions of the resultant disability; (2) Conducting of a more complete assessment of the functional development of children, ages 0-6; (3) Identification of possible prevention factors of disability; and (4) Exploration of some current practices and resources in the community in dealing with disability and rehabilitation issues. Gaston de Mezerville In reviewing the literature related to this study, the role played by evaluative research and needs assessment was presented in the context of a larger framework such as N.H.0.'s intervention model in rehabilita- tion. The assessment of community needs was described as an essential component of evaluative research, and a necessary first step in adequate program planning when conducted prior to intervention. Theoretically, a needs assessment was defined as the process by which one identifies needs and decides upon priorities among them. The present status and needs study related exclusively to the first task of this definition, laying the foundation for future research regarding the second task of needs assessment: the decision about priorities. The design of the study was introduced by a description of the method employed in collecting the data. Three approaches were selected as a part of the method, each of them adding to the others an alterna- tive and necessary dimension for the description of the status and needs of the districts with regard to disability and rehabilitation. Concerning the subjects and sampling procedures utilized in this study, two samples of 100 dwellings in the district of San Antonio, and one sample of 50 dwellings in the district of Quebrada Honda were selec- ted through systematic random sampling out of a total population of 1,400 dwellings located in both districts. The instruments used for assessing disabling conditions and rehab- ilitation factors fall under the following three categories: 1. A "Household Questionnaire on Disability and Rehabilitation," which was developed for the purpose of identifying functional limita- tions and assessing the different dimensions of the resultant disability in terms of the rehabilitation care received, the activity level and Gaston de Mezerville self-care of the disabled, and the attitudes toward the limitation. This instrument was patterned after the “w.H.0. Model of Interventions to diminish the impact of disability." 2. Psychological and developmental testing of children using The Denver Developmental Screening Test, The Wechsler Intelligence Scale for Children, and The Beery's Developmental Test of Visual-Motor Inte- gration. 3. Structured interviews were designed for the purpose of assess- ing current rehabilitation practices and resources, as well as community needs, as they are viewed by the people of the communities themselves, or according to the opinion of three experienced local professionals whose work deals specifically with disability and rehabilitation issues in that geographical area. In this way, the available and potential resources in the area of rehabilitation were surveyed. Also, the "attributed needs" or "desired state of affairs" as judged by the spe- cialists in the field were evaluated, thus complementing the expressed rehabilitation needs as they were perceived by the communities ("consu- mer's view") and assessed through the other methods mentioned above. The main findings of the study concerning the rehabilitation needs of the districts can be summarized as follows: 1. Lack of rehabilitation treatment other than medical treatment which is usually limited to the prescription of medicines. 2. Lack of orthopaedic treatment for persons who suffer from physical limitations. 3. Lack of any type of program or rehabilitation strategy for problems concerning alcoholism. 4. Lack of adequate stimulation in children as a consequence of Gaston de Mezerville cultural deprivation in some of the homes which appears to be the determinant factor related to developmental delays in language and fine-motor control. 5. Lack of school and/or community resources for diagnosing and properly dealing with most disabilities in children. 6. Lack of community awareness regarding the incidence of dis- abling conditions in the districts and the available means for dealing with them. 7. Lack of adequate rehabilitation treatment received by disabled persons in the communities due, to a certain extent, to defective com- ponents in the present delivery system. 1 have been In summary, the first two steps of an evaluation study achieved: (a) the detection of community problems and identification of unmet needs, and (b) the surveying of available and potential re- sources. The following step, which can be defined as the establishment of priority goals, should consist of implementation of activities such as (a) matching identified needs and resources, (b) developing alternative strategies of intervention, and (c) selecting the most appropriate programs to be used in the rural communities. 1Directed by Dr. John E. Jordan, College of Education, Michigan State University, East Lansing, Michigan 48824. I dedicate this thesis to my father, Dr. Jorge de Mezerville Quirds, and to my uncle, don Alfredo Esquivel Carranza. They lovingly taught me the right meaning of work, and helped me to start my walk as a man on paths of integrity and responsibility. ii ACKNOWLEDGMENTS I desire to express my deep gratitude to Dr. John E. Jordan, Chairman of my Doctoral Committee, who has guided and supported me in innumerable ways throughout graduate school. My sincere appreciation also to the members of the Doctoral Committee: Dr. G. Marian Kinget, Dr. James Engelkes, and Dr. David Heenan. I am indebted in a special way to Dr. Rodrigo Sanchez Ruphuy, whose presence throughout all these years will never be forgotten. Several institutions have been of invaluable assistance to me: the International Rehabilitation-Special Education Network, I.R.S.E.N., the Center of Teaching and Research of the Costa Rican Social Security System, C.T.R., and the University of Costa Rica. I want to acknowledge the support given to me by Dr. Carlos Ml. Prada, Director of the C.T.R., during the months I spent in Costa Rica. Special thanks also to Dr. Guillermo Robles and Dr. Tobias Rosales, pioneers in the field of rural health programs. My deepest appreciation to Dr. Javier Becerra, current Director of the Rural Community Comprehensive Health Program in San Antonio. The friendship and hospitality shown to me by him and his wife Irene during my stay in Nicoya are unforgettable. I was very fortunate to count on the experience of don Rafael Trigueros Mejia, Statistician. To him goes the credit for endless hours of cooperation concerning this study. iii My gratitude to the staff of IRSEN-C.R.; particularly to Maria del Rocio Chacdn, Josefina Espinoza, Maria del Carmen Calderdn, and Magdalena Pazmifio. Thanks also to the Psychology students of the University of Costa Rica and their group leader Dora Arroyo de Vargas, who made possible the psychological evaluation of children in Nicoya. In typing and editing this thesis I counted on the help of Ana Luisa Yglesias in Costa Rica, and Joyce Sisung and Mike Iott in Michi- gan. I am particularly indebted to Dee Milkie, who dedicated many hours of her time to typing the final copy of this dissertation. In general, I am grateful to all the staff of the different insti- tutions that collaborated with this study. At IRSEN-M.S.U., especially, Dr. Stephen K. Bedwell and Dr. William D. Frey helped me to overcome a great many of the obstacles that I encountered. I can neither forget the continuous help of my friends Denise Galluf Tate, Eric Howard, and Gerald Juhr, and the technical assistance provided by James Mullin and Mohamed Mahrous Mohamed. Indeed, I feel honored to have been one of the first graduate students at IRSEN and thankful to Dr. John E. Jordan, its funder, for making this experience available to me. Finally, to the unconditional support of my family (in Costa Rica and in Farmington Hills, Michigan) as well as the Work of Christ Community in the Lansing-East Lansing area, I credit the successful completion of this thesis. They showed me the love of God in concrete ways when I needed it the most. To Him and to His love I am eternally grateful. iv TABLE OF CONTENTS LIST OF TABLES ......................... LIST OF FIGURES ........................ Chapter I. THE PROBLEM ....................... Need .......................... Purpose ......................... Special Definitions ................... Objectives ....................... Overview ........................ II. REVIEW OF LITERATURE .................. A Model of Intervention in Rehabilitation ........ The Role of Evaluative Research ............. Needs Assessment .................... Cross-Cultural Research Methods ............. Summary ......................... III. DESIGN OF THE STUDY ................... Method ......................... The Household Survey ................. The Children Evaluation ............... The Structured Interviews .............. Subjects and Sampling Procedures ............ Instrumentation ..................... The Household Survey ................. The Children Evaluation ............... The Denver Developmental Screening Test, DDST ...................... The Wechsler Intelligence Scale for Children, WISC ................. The Beery's Developmental Test of Visual- Motor Integration, VMI ............. The Structured Interviews .............. Page vii 47 50 51 53 Chapter Procedure ......................... Statistical Analysis ................... Summary .......................... IV. ANALYSIS OF RESULTS .................... Objective 1 ........................ Objective 2 ........................ Objective 3 ........................ Objective 4 ........................ Interview with the Director of the Rural Community Comprehensive Health Program in San Antonio ...... Interview with the Senior Principal of the P020 de Agua Elementary School in the district of San Antonio ........................ Interview with the head of the Social Work Unit at the Hospital de la Anexion ............... Summary Statement of the Need ............... V. SUMMARY, CONCLUSIONS AND RECOMMENDATIONS ......... Conclusions ........................ Recommendations ...................... APPENDICES A. Household Questionnaire on Disability and Rehabilitation B. Structured household interview .............. C. Spanish version of Household Questionnaire on Disability and Rehabilitation ................... D. Spanish version of Structured household interview ..... BIBLIOGRAPHY .......................... vi 103 104 106 109 112 113 116 137 152 154 Table 3.1. LIST OF TABLES Number of persons and dwellings of the population and sample population in the districts of San Antonio and Quebrada Honda ............. Sample population according to developmental age groups in the districts of San Antonio and Quebrada Honda ................... Number of children assessed with the DDST, WISC, and VMI tests, by category according to sex and age ...................... Types, frequencies, and percentages of identified functional limitations assessed in terms of resultant disability ................ Types, frequencies, and percentages of physical limitations according to W.H.O.'s classification of diseases (1967) ................. Frequencies and percentages of medical opinion categories regarding physical limitations ..... Frequencies and percentages of suggested medical treatment categories concerning physical limitations .................... Types, frequencies. and percentages of identified mental limitations ................. Incidence of different types of rehabilitation care and treatment received by persons in each category of functional limitations ......... Incidence of "assistance-seeking behavior" in c0ping with alcoholism, by categories according to individual, family and community levels ..... Incidence of functional limitations, by category according to a compound estimate of individual self-care level .................. Page 38 38 53 64 65 67 67 68 7O 71 72 Table 4.9. 4.10. Classification of functional limitations, by category according to a compound estimate of individual activity level .............. Classification of functional limitations, by category according to a compound estimate of individual attitude level regarding the limitation ...................... Incidence of functional limitations, by category according to an overall compound estimate of individual disability-related condition ....... Incidence of physical, mental, and alcohol-related functional limitations, by category according to sex and age .................... Incidence of physical, mental, and alcohol-related functional limitations, by category according to separate compound estimates of family and community attitudes regarding the limitation ..... Incidence of different overall diagnostic levels attained by children on the Denver Developmental Screening Test, by category according to district ....................... Incidence of different diagnostic levels attained by children on Denver Developmental Screening Test, by category according to four sectors of development ..................... Incidence of disruptive conditions during psychological testing, as observed by examiners .......... Incidence of functional limitations observed by examiners during psychological testing ........ Observed language limitations compared with language diagnostic level achieved by children on Denver Developmental Screening Test ............. Frequencies and percentages of WISC I.Q. scores, by standard intelligence categories ......... Incidence of children diagnosed as "Abnormal" on the DDST's language sector, by category according to I.Q. level ...................... viii Page 75 75 77 79 82 83 85 86 87 88 89 Table 4.21. 4.22. 4.23. 4.24. 4.25. 4.26. 4.27. "Questionable-Abnormal" versus "Normal" DDST diagnosed children, by category according to two household factors ............... "Questionable-Abnormal" versus "Normal" DDST diagnosed children, by category according to two health-related factors ............. "Questionable-Abnormal" versus "Normal" DDST diagnosed children, by category according to four factors: "Use of shoes," "Use of tooth- brush,” "Regularity of bathing/washing," and "Regularity of changing clothes" .......... Incidence by family of awareness of disabled people in the district ............... Frequencies and percentages of peoples' opinions regarding medical attention received by disabled persons in the districts .............. Means and standard deviations of peoples' opinions regarding different issues, as these pertain to family and community life ............. Frequencies and percentages of peoples' opinions regarding most effective means of action for community improvement ............... ix Page 94 95 97 97 98 99 Figure LIST OF FIGURES The cycle of underdevelOpment ............ Suchman's Model of Applications of Intervening Variable ..................... A Theoretical Model of Intervention in Rehabilitation . . . . . ............. The Disability Process according to W.H.O.'s Model ...................... W.H.O.'s Model of Interventions to diminish the impact of Disability ............... Nicoya County (62) in the province of Guanacaste, Costa Rica .................... Districts of San Antonio and Quebrada Honda in Nicoya County, Guanacaste ............ District of San Antonio, divided by Sectors. Sample 1 ..................... District of Quebrada Honda, divided by Subsectors. Sample 1 ..................... Basic classification of Functional Limitations Content Analysis by Levels and Categories of Items in Section VII of the Questionnaire . . . . The Test Form of the Denver Developmental Screening Test .................. Frequency distribution of discrepancy scores expressed in months on the Beery's VMI test of all 4-6 year old children in the sample Page 2 11 12 14 15 3O 31 32 34 42 44 48 90 CHAPTER ONE: THE PROBLEM For most deveTOping countries, the need for providing adequate health and rehabilitation services to all of their citizens is clearly affected by the limited resources available to them for the accomplish- ment of this task. Costa Rica is not an exception. In order to meet this challenge it has enacted legislation mandating a fully socialized health delivery system. Under the current social security legislation, most of the p0pula- tion is entitled to receive health and rehabilitation care. This law, furthermore,fbreseesthe universalization of services to all citizens of the country within a few years. The dimensions of the problem in Costa Rica are illustrated by the fact that there are only 1,500 physicians to serve the country's popu- lation of two million inhabitants; besides, 80% of these physicians are concentrated in the urban areas. In this context, sophisticated medi~ cine and basic research, both relying on and requiring high levels of technological support, clearly fail to meet the health and rehabilita— tion needs of the country. Dr. Rodrigo Sanchez-Ruphuy (1977), Director of the Division of Behavioral Sciences of the Costa Rican Social Security System, contends that the utilization of an inadequate health care system, instead of contributing to the solution of the problem, is in fact generating a vicious cycle of underdevelopment (Figure 1): "Underdevelopment or low socioeconomic level," he says, "produces poor diet which causes malnu- trition, leading to sickness, disabilities, and shortened life expec- tancy. This in turn causes low economic production that contributes further to social and economic underdevelopment" (Sanchez, 1977, pp. 910-911). Underdevelopment i \ Low socioeconomic level More illness Low production Low investment in prevention 1 Poor diet Lower life Higher investment expectancy in medical care Higher disability (‘\‘ Nutrition Sickness Figure I. The cycle of underdevelopment. The Costa Rican Social Security System as well as the Ministry of Public Health have started to recognize the need for promoting a new approach to health and rehabilitation in order to facilitate advances in community socioeconomic development. Thus, new strategies are being devised, and the task of designing a more comprehensive health model is already underway. The "Rural Community Comprehensive Health Program of San Antonio" in the province of Guanacaste, sponsored by the Social Security System, and the "San Ramon Rural Health Program" in the province of Alajuela, sponsored by the Ministry of Public Health are two current examples in Costa Rica of the previously described trend toward the establishment of a new health model. In the development of such a model the following aspects have been given special emphasis: A preventive approach, which tends to identify and promote health- sustaining and disability prevention factors, instead of focusing only on the delivery of services exclusively directed toward health recovery, after the onset of illness or disability. A community approach, which focuses initially on the rural areas, in order to counteract the existing centralization of services in and around the more heavily populated cities. A cooperative approach, which attempts to coordinate the services of different types of professionals in the health field, as well as community resources, in order to better meet the complex needs of the people in the communities. In summary, the emphasis on prevention, smaller communities, and cooperation constitutes the core of the projected comprehensive health model. Nggg Having considered the general health situation in Costa Rica, it is possible to better understand now the specific rehabilitation needs of the country. Several specialized agencies within the United Nations (the World Health Organization, W.H.O.; the United Nations Educational Scientific and Cultural Organization, U.N.E.S.C.0.), as well as other organiza- tions such as the International Society for Rehabilitation of the Disabled, I.S.R.D., state that at least 10% of any country's population suffers some type of physical or mental disability. According to this estimate, Costa Rica faces the challenge of providing rehabilitation services to approximately 200,000 disabled persons. In this regard, the Costa Rican National Council of Rehabilitation and Special Education, N.C.R.S.E., has recently stated that the exist- ing resources in the field of rehabilitation are not enough to offer adequate services to more than 25% of the disabled population (N.C.R.S.E., 1977). This lack of resources is particularly acute in the rural areas due to the high concentration of available services in and around the country's largest cities. In response to this need for increasing rehabilitation services and resources, W.H.O. has suggested a general strategy of intervention to diminish the impact of disability. In W.H.O.'s Report on Specific Technical Matters on Disability Prevention and Rehabilitation (1976) the disability problem in the world is closely examined and proposals for its solution are reformulated. These proposals, however, are meant to be adapted to the specific conditions of each country. In this regard, there seems to be a high degree of agreement between the W.H.O. suggestions and the essential elements of the health model presented in the beginning of the chapter. In more concrete terms, the comprehensive health model currently considered by the Costa Rican Social Security System makes provision for the development of specific strategies in the fields of rehabili- tation and mental health which can be incorporated within the overall model. The National Council of Rehabilitation and Special Education is the leading entity in Costa Rica responsible for directing and coordi- nating these efforts. This Council represents the Social Security System as well as a dozen other institutions, and works in collaboration with the Ministry of Public Health, the Ministry of Edu- cation, and the Ministry of Labor and Welfare. In fulfilling this role, the N.C.R.S.E. is taking into account the basic guidelines suggested internationally by the World Health Organization, and is seeking to direct the rehabilitation and special education fields towards adopting an efficient and workable model. Consequently, a great deal of attention is currently being given to the need of developing a strategy or model that could better serve the country in the area of rehabilitation services. This model refers specifically to the field of disability prevention and rehabilitation, but is also meant to be incorporated within the larger framework of a comprehensive health model like the one described in the beginning of the chapter. A first step in the development of a model such as this implies the conducting of status and needs studies which are meant to serve as a foundation for the diagnosis and analysis of some variables in re- habilitation that need to be taken into account in the implementation of such a model. According to the W.H.O.'s report on specific technical matters mentioned before, the conducting of this type of a research study prior to the implementation of a new model contributes significantly to overcome those planning deficiencies that most conventional services in rehabilitation have had in the past (W.H.O., 1976, p. 25). Purpose In the context of the need previously described, the purpose of this study is viewed as an attempt to contribute to a first stage in 6 in the development of a rehabilitation model by providing a description of the status and needs of a particular rural area in Costa Rica in regard to disabling conditions and rehabilitation. Due to the emphasis given in this study to the rehabilitation con- ditions of rural districts, the research has been set up in collabora- tion with the Costa Rican Social Security System which is particularly committed to the development of a comprehensive health model in those areas. In this regard, the International Rehabilitation - Special Edu— cation Network, I.R.S.E.N., is presently carrying out an evaluation research project in Costa Rica, which intends to measure the impact of a pilot implementation of the pr0posed Costa Rican Social Security Comprehensive Health Model, by assessing the health status and needs of the populations of the district of San Antonio (setting of the pilot implementation) and the comparative district of Quebrada Honda. As stated previously, the purpose of the present study is more specific than the one pursued by the I.R.S.E.N. evaluation research project. It consists exclusively of addressing the disabling condi- tions and rehabilitation factors present in the two rural districts of San Antonio and Quebrada Honda. It is not within the scope of the purpose of this study, however, to evaluate the Comprehensive Health Program in regard to the areas of disability and rehabilitation. Special Definitions In an attempt to improve communication in dealing with disability prevention and rehabilitation issues, some of the guidelines and terminology suggested by W.H.O. have been adopted within the context of this research (W.H.O., 1976). The following definitions from the W.H.O. report are particularly relevant for understanding the objectives of the study: _ Impairment: "It is a permanent or transitory psychological, physiological, or anatomical loss and/or abnormality, such as an amputated limb, paralysis after polio, myocardial infarction, cerebro- vascular thrombosis, restricted pulmonary capacity, diabetes, myOpia, disfigurement, mental retardation, hypertension, perceptual disturbance, etc..." Functional Limitation: "It is the partial or total inability to perform those activities necessary for motor, sensory, or mental functions within the range of which a human being is normally capable, such as walking, lifting loads, seeing, speaking, hearing, reading, writing, counting, taking an interest in and making contact with surroundings, etc..." Disability or Disabling Condition: "It is an existing difficulty in performing one or more activities which, in accordance with the subject's age, sex and normative social role, are generally accepted as essential, basic components of daily living, such as self-care, social relations, and economic activity" (W.H.O.,1976, p. 7-8). Also, considering that the raison d'etre of a rehabilitation pro- grani consists of diminishing the impact of disability, it becomes clear that rehabilitation prevention not only implies the intervention immediately prior to the onset of disability, but must also include those actions taken to reduce the occurrence of impairment, as well as the interventions directed towards the prevention of further develop- ment in existing functional limitations (See Figure 2.4 in Chapter Two). 8 According to W.H.O. terminology, then, disability prevention in- cludes all action taken to reduce the occurrence of impairment (First Level Prevention), its development into functional limitations (Second Level Prevention), and, finally, to prevent the transition of functional limitation to disability (Third Level Prevention). Finally, although it is widely accepted that the field of Special Education deals specifically with the impact of disability on individ- uals of preschool and school age, for the particular purposes of this study the term "Rehabilitation" will encompass all actions in regards to disabling conditions affecting persons of all ages, whether they be children, youth, or adults. Objectives Therefore, this study attempts to fulfill the purpose defined previously by setting up the following objectives: 1. Identification of types of functional limitations present in the districts of San Antonio and Quebrada Honda, focusing on the different dimensions of the resultant disability in terms of the rehabilitation care received, the activity level and self-care of the disabled, and the attitudes toward disability. 2. Conducting of a more complete assessment of the functional development of the children in both districts, ages O-6, in the areas of personal-social, language, fine and gross motor development, as well as intelligence and visual-motor integration. 3. Identification of possible prevention factors of disability. 4. Exploration of some of the practices and resources currently utilized by, and/or available to the community in dealing with disability and rehabilitation issues, and tentatively pointing out areas in which there is a need for improving the present delivery system of services within their particular context. Overview In Chapter Two, a review of the literature is presented; it deals particularly with status and needs studies which exemplify the general rehabilitation model suggested by W.H.O. Also, the use of specific developmental and psychological tests cross-culturally is considered. In Chapter Three, the method, subjects and instrumentation, as well as the procedures and statistical analysis adopted as a part of the study design are described. In Chapter Four, the results of the research are analyzed and discussed in the context of the practices and resources currently available to the communities. Finally, the summary and recommendations concerning this study are presented in Chapter Five. CHAPTER TWO: REVIEW OF LITERATURE Since the long-term purpose of this study was to contribute to the development of a rehabilitation model in Costa Rica, it seemed appropri- ate to include in the beginning of the chapter some basic literature regarding the establishment of an intervention model in rehabilitation. The role that evaluative research and needs assessments play in such a model is then presented, giving special consideration to the international research conducted in this field. Particular attention is given at the end of the chapter to the issue of cross-cultural research methods, and its importance in assessing rehabilitation needs throughout the world. A Model of Intervention in Rehabilitation The consideration of a larger framework in rehabilitation within which each part of the whole plays its individual role appears to be a necessary starting point for this review of literature. Disability cannot be adequately understood out of the context of a process in which successive phases are ordered in a cause-effect re- lationship. As formulated by Chapin, "Cause and effect, or causality as a system of ideas, is an explanation of successive events by a set of assumed antecedent-consequent relationships...The concept of cause and effect...is used as a shorthand device to represent a kind of association between factors in time sequence which has a determinable probability of occurrence" (In E. A. Suchman, 1967, p. 171). Suchman (1967) defines this type of a process as including four phases: preconditions, causes, effects and consequences. Thus, three major independent-dependent subgroupings are formed: (a) the 10 11 relationship between the precondition and causal variables, (b) the re- lationship between the cause-and-effect variables, and (c) the relation- ship between the effect and the consequence variables. According to Suchman, treatment can occur at any one of these three stages acting as an intervening variable which modifies the relationship between in- dependent and dependent variables (see Figure 2.1). Wrecondi ti onsL-—-; Effects ; LConsequencesj Primary Secondary Tertiary Intervention Intervention Intervention (Prevention) (Treatment) (Rehabilitation) Figure 2.1. Suchman's Model of Applications of Intervening Variable. As a way of illustrating this theoretical model, Suchman applies it to the disease process in the health field: "Traditionally," he contends, "the field of health or medicine is largely concerned with the treatment process; physicians provide medical care to patients who have already developed the causes of illness and the objective of medical 'interven- tion' is to prevent the full effects of the disease-—death or disability - from developing. Thus, the current emphasis of medical programs is predominantly upon secondary prevention. However, with the increasing importance of the chronic, degenerative diseases (such as heart disease or diabetes) where medical treatment offers little promise of any cure, the shift of future programs is toward tertiary prevention or rehabili- tation of the patient who has already suffered the effects of the disease or disability, and to a lesser degree, upon primary prevention to decrease the probability of the development of causes of the degen- erative disease” (Suchman, 1967, pp. 173-174). In this context, Haber (1966) contributes to the definition of the 12 different phases of the disability process by identifying a cause-effect relationship between impairment, functional limitation and disability. According to Haber, certain preconditions cause the occurrence of im- pairments which may or may not lead to important functional limitations. A functional limitation, then, is characterized by a restriction or activity loss which interferes in an important manner with the normal physical or mental functioning of an individual in his daily life. In those cases when an impairment leads to functional limitations in the ability to care for oneself or to perform a key expected social role, particularly when the condition is of a permanent nature, then the im- pairment can be described as a disability (Haber, 1966). The Rehabilitation Services Administration, R.S.A., in its nggrt of the Comprehensive Service Needs Study (1975), explains the term "handicap," within this context, in the following manner: "A handicap is an event or environmental condition which interacts with a disabled person, causing a barrier to goal accomplishment that a nondisabled may not face, and which would not impede the disabled person if the world could change" (D.H.E.W., p. 24). Figure 2.2 represents an application of Suchman's theoretical model of intervention, using Haber's concepts of impairment, functional limi- tation, and disability. becondi ti ons}—-)Ilmpai rmen t J~—-) Functional Limitation [Disability] Primary Secondary Ter iary Intervention Intervention Intervention (Prevention) (Treatment) (Rehabilitation) Figure 2.2. A Theoretical Model of Intervention in Rehabilitation. 13 Within this framework, intervention can be described as the imple- mentation of an activity at some stage of the process - precondition, impairment, functional limitation, disability - for the purpose of attaining a previously defined objective. The following are a few illustrative examples of intervention in rehabilitation: 1. Vaccination of children against polio at the phase of preconditions, which can achieve the objective of pre- venting the occurrance of impairment. 2. Early treatment of trachoma at the phase of impairment, which can achieve the objective of preventing the occurrance of functional limitation. 3. The use of adequate prosthetic devices at the phase of functional limitation, which can achieve the objective of preventing the occurrance of disability. The World Health Organization, W.H.O. (1976), has adopted the basic components of this model, and has developed them further as it can be seen in Figures 2.3 and 2.4. Concerning the disability process (Figure 2.3), W.H.O.'s model emphasizes the role that causative factors play, not only upon the phase of impairment, but also upon each one of the different stages in the process. Also, it elaborates further the individual, family and societal consequences of disability in terms of the following three basic components: I. Self-care (daily living skills, such as feeding and dressing self, mobility, etc.) 2. Activity level (loss of productivity, economic lia- bility, participation in leisure activities, etc.) 3. Social integration and attitudes toward disability (W.H.O., 1976. PP. 7-12) Since the aim of the W.H.O. model of intervention is to describe I4 CAUSATIVE FACTORS Disease Attitudes Environment Social Demands IMPAIRMENT FUNCTIONAL LIMITATION DISABILITY INDIVIDUAL CONSEQUENCB Decrease of — FAMILY ‘ Independence CONSEQUENCES Mobility Need for care SOCIETY Leisure activities Disturbed social CONSEQUENCES Social integration relationships De d f Economic Economic bunden L manf oLcare . , viability, etc. etc. 085 0 pro uctmt} Disturbed social integration etc. Figure 2.3. The Disability Process according to W.H.O.'s Model. 15 DISABILITY PREVENTION First level prevention Sumndkwd prevention Thhdhaml FUNCTIONAL LIMITATION DISABILITY l INDIVIDUAL FAMILY SOCIETY CONSEQUENCES CONSEQUENCES CONSEQUENCES Hi i l REHABILITATION FOR THE DI Figure 2.4. W.H.O.'s Model of Interventions to diminish the impact of Disability. 16 the measures that are necessary to diminish the impact of disability, it becomes clear at this point that the field of rehabilitation should not be limited only to tertiary interventions. Therefore, W.H.O. has proposed the concepts of First, Second and Third Levels of disability prevention, as different stages of intervention in an overall rehabil- itation strategy (see Figure 2.4). Each one of these three levels relates closely to the concepts used in Suchman's diagram as "primary," "secondary," and "tertiary" interventions, illustrated in Figure 2.2. However, these latter stages have been mainly associated in the past with disease states, while W.H.O.'s new terminology includes factors ontside the medical sector, such as social, vocational, educational, legislative, etc. Finally, all three types of interventions (first, second, and third) act upon the individual directly as well as upon the individual's immediate surroundings (family, community, etc.) or upon society as a whole (W.H.O., 1976, pp. 13-16). In a proposed disability prevention and rehabilitation program with special reference to cerebral palsy persons in Jordan, Dr. E. Helander, a W.H.O. consultant, suggests the following steps, which are illustrative of the W.H.O. model of intervention in a concrete setting: 1. A survey to find out the size of the problem, analyze the needs of the population, the possible preventative measures and strategies feasible for the delivery of serv1ces; 2. the setting up of pilot activities to assess the effec- tiveness of prevention; 3. the setting up of pilot activities for delivery of the most essential services for CP victims, and the assess- ment of their effectiveness; 4. finally, when needs are known, and pilot activities 17 have revealed the cost/effectiveness of various dif- ferent possibilities to achieve the aims: to programme and implement a full-scale effort to prevent CP and rehabilitate CP victims (Helander, 1977, p. 2). The first step recommended by Helander consists of a status and needs assessment of the Jordanian disability situation. Steps two, three, and four elaborate upon that foundation by setting up a strategy of intervention which starts with first level prevention, and gradually goes on to include all other levels of disability prevention. It appears important at this point to study the role that evalua- tion research in general and needs assessments specifically play as a part of a rehabilitation model in light of current literature written on the subject. The Role of Evaluative Research According to Trantow (1970), "Evaluation is essentially an effort to determine what changes occur as the result of a planned program by comparing actual changes (results) with desired changes (stated goals) and by identifying the degree to which the activity (planned program) is responsible for the changes" (p. 3). In the context of the rehabilitation model described before, a program can be defined as an organized strategy of intervention which selects and performs one or more activities, with the support of speci- fic resources, for the purpose of attaining previously defined objec— tives. Such a program, therefore, is the concrete expression of a theor- etical model, from‘which it derives the organization of its overall strategy. It is the role of evaluative research, then, to contribute to program development by defining and assessing community needs, and 18 by showing the extent to which the program activities do in fact attain the previously stated objectives. Suchman (1967) finds that evaluative research blends itself par- ticularly well to the cause-effect nature of a model such as the one described in this chapter. The concept of causality in the disability prevention and rehabilitation model is characterized by a chain or nexus of events related along a time dimension: impairment, functional limi- tation, disability. Thus, the relationship between independent and dependent variables prepares the stage for the conducting of a social experiment in which a program activity plays the role of intervening variable, and evaluative research measures its impact by analyzing the changes brought about into the process. Considering some of the implications of this appraoch, Suchman affirms that "...the longitudinal panel design comes closest to satis- fying the methodological requirements of the experimental model and offers the greatest promise for evaluative research. This is largely because evaluation over time provides a technique for making 'before' and 'after' measurements and for placing the independent, intervening, and dependent variables in proper sequence" (Suchman, 1967, p. 175). In the article, An Introduction to Evaluation, Program Effective- ness and Community Needs (1970), Trantow suggests a "Program Planning Cycle" which illustrates also the relationship between intervention and evaluation over time within a well-developed program. This ideal process has the following steps: I. Detect and define community problems and identify unmet needs. 2. Survey available and potential resources (facilities, financial support, personnel). 19 3. Establish priority goals (match needs and resources, develop alternative programs, choose most appropriate programs). 4. Formulate and implement necessary administrative activities to achieve program goals. 5. Relate results to goals by periodic or continuing evaluation studies, or both. 6. Repeat the process (redefine problems, reassess unmet needs, resources) (Trantow, 1970, p. 7). The R.S.A.'s Report of the Comprehensive Service Needs Study (1975, p. 1-834), which was developed in compliance with the directions given by the Rehabilitation Act of 1973, contains many program evalua- tion studies conducted at all different levels of Trantow's "Planning Cycle." Most of these studies, however, refer to community needs assess- ments and evaluation projects in the context of already existing rehabilitation programs. The purpose of those studies was to evaluate the appropriateness, adequacy, efficiency, and/or effectiveness of the programs and to made recommendations concerning possible ways for improving them. Matthews' Community Health Survengrqject (1974), on the contrary, exemplifies a needs assessment of Black communities living in the Mississippi Delta prior to an organized strategy of intervention. In this study, a group of 75 houses was selected at random, and all the household heads were given a questionnaire which evaluated different aspects such as poverty, housing, education, physical health, early life experiences, and mental health. The results of this project pro- vide identification and analysis of important facts related to the health needs and resources of the Black communities. This information 20 could be used later as a foundation for initiating health programs geared toward the fulfillment of those needs. It is in the context of assessments conducted prior to intervention that the specific t0pic of needs assessment is reviewed in this chapter. Needs Assessment The assessment of needs constitutes a necessary first step in pro- gram planning and program evaluation. According to Anderson, Ball, Murphy, and associates (1975), "Needs assessment is the process by which one identifies needs and decides upon priorities among them." In this regard, a need can be defined as a discrepancy between a current state of affairs and a desired state of affairs (English and Kaufman, 1975, p. 64). The first task in conducting a needs assessment, therefore, is characterized by the identification of community needs. This may be done either in an objective or subjective way. Anderson, et al. define these two approaches as follows: "In the case of an objective needs assessment...the level of measured performance is compared with the level judged acceptable. In the second case (subjective needs assess- ment), selected judges are asked to indicate the extent to which needs exist in a given area. However, the line between the two approaches is somewhat blurred, for a value judgement is necessary in either case... (Consequently) it is possible to have various combinations of 'objective' and 'subjective' needs assessments" (Anderson, et al., 1975, p. 254). Whichever approach is adopted, the identification of community needs essentially implies the conduction of a status and needs study whose purpose is to define the current state of affairs as opposed to 21 that judged to be desirable and/or acceptable. Once the needs have been identified, the second task consists of an assessment of priorities among those needs for the purpose of defin- ing action programs. Matthews's status and needs study of Black people in the Missis- sippian Delta refers only to the first task of a needs assessment as it is clearly stated in its final paragraph regarding future plans: “In our results," Matthews says, "we have only indicated the existing poor mental health rather than the remedy for such a result (though we indi- cated the need). Our future investigations will include studies to identify the solutions to the existing problems" (Matthews, 1974, p. 6). In Helander's proposed disability prevention and rehabilitation program in Jordan, the second task of a needs assessment, identifica- tion of priorities, is also included within the program design. Among his recommendations regarding conducting a needs assessment prior to the develOpment of program activities, he suggests the following strat- egy: (To gather information regarding)...the needs for rehabilitation, as perceived by the patients themselves, their families and communities. This would serve to get "the consumer's view." At the same time, the needs for actions should be defined by specialists, to get the "attributed needs." Implementation should preferably start with meeting the most pressing needs, as preceived by the population itself, and gradually change its emphasis towards meeting attributed needs (Helander, 1977, p. 2). In this report, Helander also mentions two other needs assessments being presently conducted by W.H.O. in the state of Maharashtra, India, and in Jakarta, Indonesia. These two status and needs studies have been developed following the general rehabilitation strategy proposed by W.H.O. in its Report on Specific Technical Matters Rggardigg 22 Disability Prevention and Rehabilitation (1976). The questionnaire prepared by the Institute of Health Research and Development in Jakarta, for instance, approaches the assessment of dis- ability in a sequential manner: starting with the task of recording the presence of specific chronic impairments, identifying then the existence of functional limitations, and finally, analyzing the result- ant disability in terms of individual, family and societal consequences (Indonesia - W.H.0., 1977, pp. 1-33). It is a fact, however, that very little research has been done internationally following the general strategy suggested by W.H.O. in 1976. The status and needs studies mentioned before are still underway, and consequently, results are not available yet. The conducting of international research studies, in this case needs assessments, adds another dimension not considered so far in this chapter: the utilization of cross-cultural research methods. Cross-Cultural Research Methods W.H.O. (1976) has stressed the need for conducting needs assess- ments prior to program intervention as a first step in the implementa- tion of a rehabilitation strategy in different countries of the world (p. 25). The general model proposed by W.H.0., however, needs to be adapted to the particular circumstances and cultural characteristics of each country. Also, the methods utilized in conducting a needs assessment may vary in each case depending on the type of problem to be measured, the samples used, the resources available, etc. Helander (1977), for instance, suggests three different approaches for collecting the data 23 related to cerebral palsy and general disability in Jordan: 1. To include a question regarding mobility disturbances in the 1978 national census in Jordan. 2. To have the persons identified by the census as pre- senting mobility disturbances examined by an expert to determine whether the functional limitations in use of the extremities depends on cerebral palsy or on other impairments. 3. To conduct a parallel general disability survey with a sample of some 4,000 households (or a total of 25,000 to 30,000 individuals) (Helander, 1977, pp. 2-3). Conducting this type of a survey in Jordan exemplifies the fact that different methods can be utilized in assessing needs such as house- hold surveys, developmental or psychological testing, professional assessment of individuals, etc. In choosing the appropriate methods to be applied in international settings, careful consideration must be given to the culture where the research is conducted. Arici, from Hacettepe University in Ankara, affirms that "as cul- tural factors affect an individual's behavior in many ways, behavior cannot be measured or analyzed independent of culture... Differences between cultures and-differences among subcultures within a culture should always be given due attention in developing tests or adapting instruments from other cultures" (In L. J. Cronbach, 1972, p. 20). Instrument adaptation becomes especially relevant in the field of rehabilitation when attempting to measure the psycho-social components of disability. As Ortar (1972) has stated, ”Most countries do not pro- duce their own psychological tests and have to adapt instruments devel- oped elsewhere. Change is needed to make the test suitable in circum- stances different from those for which it was originally prepared. Modifications vary in kind and extent, and 'adaptation' may range from 24 rewording of a few items to construction of a virtually new test based on the original model. The most frequent procedure, translation into a different language with changes in some items, is a specific point on the continuum" (In L. J. Cronbach, 1972, p. 111). Ortar's adaptation of the Wechsler Intelligence Scale for Children (WISC) to Israel clearly illustrates the point she makes in her previous statement (pp. 117-120). Translations of well-known tests into different languages are often available to the researcher who finds himself in the planning stages of the design of a cross-cultural study. In the book Cross-Cultural Research Methods, Brislin and associates stress the fact that a trans- lation of a test, however, "by no means constitutes a license to apply it without first carefully considering its validity and reliability for its current cross-cultural use" (Brislin, et al., 1973, p. 115). Attention must be given also to the subcultural context within a culture where a particular instrument of measurement is going to be used. Differences between urban and rural populations, between higher and lower socio-economic classes as well as between the educated and the uneducated in society deserve special consideration in the process of selecting and interpreting psychological tests. In a study conducted by Greenfield,-Reich, and Olver with the Wolof tribe of Senegal, significant differences were found in the de- velopment of symbolic processes between city and rural school children. Bruner and his associates believe that the difference between the city child and the rural child derives from "differential exposure to problem solving and communication in situations that are not supported by con- text, as in the case with, for example, most reading and writing, the use of monetary exchange, and schooling" (In J. S. Bruner, et al., 25 1966, p. 315). In the article Social Class Differences in the Performance of Nigerian Children on the Draw-A-Man Test, Bakare reports that the upper- class children in every grade significantly outperformed their lower class counterparts. The scores of upper-class Nigerian children on the Goodenough Test, however, did not differ significantly from those scores of the American and English children going to the same school (In L. J. Cronbach, 1972, pp. 355-363). These studies, as well as many others mentioned by Lesser and asso- ciates in a monograph entitled Mental Abilities of Children from Differ- ent Social-Class and Cultural Groups (1965), present enough evidence supporting the need for taking special precautions in the utilization of psychological tests. As a final comment concerning this topic, Brislin, et al. offers the following areas as important for consideration in the proper selec- tion and use of a psychological test: 1. The Selection of Tests 2. Administration and Response Elicitation 3. Behavioral Representativeness of Samples Responses (Content Validity) 4. The Existence of a Measurable Construct 5. Suitable Measurement and Evaluations Scales (Norms) (Brislin, et al., 1973, pp. 139-142). Summar In this chapter the role played by evaluative research and needs assessment has been presented in the context of a larger framework such as W.H.O.'s intervention model in rehabilitation. 26 The cause-effect nature of this model has been found to add rele- vance to conducting social research by defining independent-dependent subgroupings at different stages of the process. In this way, the introduction of a program activity plays the role of an intervening variable, and evaluative research performs the task of measuring its impact by analyzing the changes brought about into the process. The assessment of community needs was presented as an essential component of evaluative research, and a necessary first step in adequate program planning when conducted prior to intervention. In this respect, the first point suggested by W.H.O. Consultant Dr. E. Helander concerning the conducting of a needs assessment coin- cides almost identically with the objectives of this study (see p. 16 of this chapter). Theoretically, a needs assessment was defined as “the process by which one identifies needs and decides upon priorities among them“ (Anderson, et al., 1975). The present status and needs study related exclusively to the first task of this definition, laying up the founda- tion for future research regarding the second task of needs assessment: the decision about priorities. Finally, the implications of using research methods cross-cultur- ally was discussed, emphasizing the need for adaptation to the partic- ular circumstances and cultural characteristics of each country where research is to be conducted. CHAPTER THREE: DESIGN OF THE STUDY The purpose of this study was to describe the status and needs of a particular rural area in Costa Rica regarding disabling conditions and rehabilitation factors. In the present chapter, the method, sub- jects, and instruments, as well as the procedures and statistical analysis employed in the study are presented. was In designing the procedures for collecting the information for the study several different approaches were considered, ranging from longi- tudinal to cross-sectional surveys, and from clinical assessments of disability to unstructured interviews regarding community practices and resources in rehabilitation. After considering these approaches, three of them were chosen due to their intrinsic potential for supplying the desired information within the particular constraints and limitations of the study. Thus, each approach was meant to complement the others by providing different perspectives on the same topic. These approaches are: 1. A household survey of functional limitations and resultant disabilities. 2. A psychological and devel0pmental evaluation of children, ages 0-6. 3. Structured interviews regarding community practices, resources and needs. The Household Survey The first approach is related to objectives 1 and 3 of the study as stated in Chapter One. 27 28 This approach dealt with the identification and assessment of functional limitations and resultant disabilities, as well as possible disability prevention factors. By using a survey design with a representative sample of house- holds in the designated geographical districts, the basic information concerning disabling conditions such as the activity level and self— care of the disabled, attitudes toward disability, and the rehabili- tation care received could be systematically investigated. The Children Evaluation The second approach relates to objective 2 of this study, and con- sists of a more complete assessment of selected children in the dis- tricts with the aid of developmental and psychological tests. Thus, the functional development of all children younger than six years of age who were part of the sample of households chosen previously was assessed. The testing involved areas such as personal-social, language, fine and gross motor development, as well as intelligence and visual- motor integration. The rationale behind this approach was to get an in-depth clinical assessment of the disability situation in the districts, which the household survey by itself could not offer. The Structured Interviews This final approach, which specifically refers to objective 4 of the study, complemented the other approaches by describing the current practices and resources utilized by and/or available to the communities in dealing with disability and rehabilitation issues. Three prominent individuals from the fields of medicine, education, 29 and social sciences in the community were interviewed concerning the impact of each one of their specialty areas on the disability situation of the districts. As a counterpart to the opinion of these authorities in the help- ing professions, an opinion poll of the households in the districts was also conducted within the household survey. It addressed those "felt needs" of the population regarding health and rehabilitation services, education, family diet, housing,and working situations, as well as their available means of social action for bringing about changes in the system. In summary, each one of the approaches utilized within the method- ology of this study added to the others a different and necessary dimension for the description of the status and needs of the districts in regards to disability and rehabilitation. Subjects and Sampling Procedures The districts of San Antonio and Quebrada Honda, which are part of the Nicoya County in Costa Rica (see Figures 3.1 and 3.2), were selected as the sites for the present status and needs study. These two districts, therefore, constitute the population to which the findings of this study are to be generalized. San Antonio is known as the third district of Nicoya, a county of the province of Guanacaste thosta Rica. Its extension is 204 square kilometers, with seven thousand inhabitants living in approximately 1,200 dwellings (see Figure 3.3). For the past two years, San Antonio has been the site for a pilot implementation of the Social Security Comprehensive Health Model described in Chapter One. 30 a: an a. nu -r u. n- tom (tutu: if“: r .l f" s‘ A”! . ‘L C. n'j;;%é: . a i tn PANAMA .v w. a. —V Figure 3.1. Nicoya COunty (G2) in the province of Guanacaste, Costa Rica. 31 NicancuA Parlflc Oc(ATI Figure 3.2. Districts of San Antonio and Quebrada Honda in Nicoya County, Guanacaste. 32 DIS‘ 2' 30‘ 50‘ s n a a n . - o u ‘sArNPANT \ Figure 3.3. District of San Antonio, divided by Sectors. Sample 1. 33 The fourth district of Nicoya County, Quebrada Honda, was also selected to be a part of this study (see Figure 3.4). Quebrada Honda is a neighboring district of San Antonio. It is smaller than the latter, with a population of about one-third that of San Antonio. The proximity of this district to the city of Nicoya, the methods of trans- portation and its geographical location, among other characteristics, are similar to those of San Antonio. The distinguishing feature between the two districts is the fact that Quebrada Honda is not in- cluded as a part of the initial piloting of the Comprehensive Health Model. Consequently, this district was chosen to be a comparison group for the Evaluation Project that IRSEN was conducting in Nicoya. A first priority for the present sample design was the building of an adequate sample frame. It had been decided since the beginning of the pilot implementation of the Comprehensive Health Model in San Antonio to utilize maps on which every dwelling could be drawn. Also, specific information about each household in the district was recorded and kept in the files of the rural health centers in the towns. This information was gathered according to the needs of the project, and in a fashion that would be easy to replicate for other districts or counties where the Comprehensive Health Model could also be implemented. The household information recorded was: Name of the sector Name of the subsector Number of the dwelling Distance from the dwelling to the nearest health center Total number of members of the dwelling Total number of preschool age children Total number of school age children Total number of adults Participation of the members of the dwelling in community associations. mmwmm-wao—I 34 O I , o h . n C n l a . ’ .ISIIHO l\- I .. \, ‘ \ “w _ ~ _ 223;? “I. Heed. ‘ ‘ '. " I Y \ I I ‘ ‘ ’ l i ‘. ‘ l eases std"..- '1 (5'1: 5' LI v cram ‘ ' .. -. i DISTRITC cmmmm f" - . ' ‘ g _“"-'-';: \\\‘ . ., . _,.r _ . . . \ C‘N.SK 2e \:C'& y—C . -——-———¢. . ", f .-‘..(\.. , ‘.l _. ‘-, “' .“ \\ . —'——‘;.— ‘o,, ....... . \S ' 6 Figure 3.4. District of Quebrada Honda, divided by Subsectors. Sample 35 Prior to the implementation of this study, a similar sample frame was constructed for about 75% of the dwellings in the district of Quebrada Honda. Due to the lack of necessary resources, not all of the dwellings in Quebrada Honda were recorded, although, as can be seen in Figure 3.4, the dwellings included in the sample frame are well distributed throughout the district and appear to be an adequate repre- sentation of it. The type of information gathered regarding each household in both districts reflects the criteria originally used by the program coordi- nators in conducting the piloting of the Comprehensive Health Model. The following assumptions were basic in the organization of the data included as a part of the sample frame: 1. It was assumed that the farther the distance between the dwelling and the closest health center, the lower would be the level of health prevention in the house. Thus, for the purpose of conduct- ing research, this variable had to be adequately controlled. 2. A second assumption indicated that the age composition of the family had an impact on the level of health prevention in the house. Families with preschool age children and/or school age children were expected to show a higher level of health prevention than those fami- lies represented only by adult members. Therefore, this variable needed to be controlled also in the design of the research study. 3. A third assumption was related to participation in community associations. Experience in the health field in Costa Rica seems to indicate that those families whose members participate actively in community associations have a higher level of health prevention than those who do not. Thus, this variable had to be controlled also in 36 order to account for its influence on the results of this study. Within the sample frame for San Antonio and Quebrada Honda the districts were subdivided into geographic sectors and subsectors. A sector included several localities with a total number of about 200 dwellings. Taking into account the main centers of population within each sector, they were subdivided again into subsectors, each of which included a different number of dwellings, depending mainly on their geographical characteristics. The limits of sectors and subsectors were clearly defined and indicated on the maps (see Figures 3.3 and 3.4), and each house was adequately numbered within the subsector and the sector to which it belonged. Thus, San Antonio was subdivided into five sectors and twenty subsectors as follows: 1. San Antonio - 4 subsectors 2. San Lazaro - 5 subsectors 3. Moracia - 5 subsectors 4. P020 do Agua - 3 subsectors 5. Corralillo - 3 subsectors Quebrada Honda was not subdivided into sectors due to the fact that its recorded number of dwellings was only 222. This district, however, was subdivided into eleven subsectors following the same cri- teria used in the district of San Antonio. The subsectors of Quebrada Honda are the following: Quebrada Honda, Copal, Loma Bonita, Millal, ParafSo, Puerto Moreno, Sonzapote, Roblar, San Juan, Tres Esquinas, and Sombrero. According to the criteria described above, all the dwellings in the population were classified by district as follows: 1. Family composition: - Preschool age, school age children, and adults 37 - Preschool age children and adults only - School age children and adults only - Adults only 2. Participation in community associations: - Yes - No 3. Distance from the dwelling to the nearest health center (as measured by the time that it takes for a person to get there, while using the most common type of transportation available to the members of the house): - Less than half an hour - Half an hour to one hour - More than one hour 4. Sectors: San Antonio San Lazaro Moracia Pozo de Agua Corralillo Quebrada Honda The population of dwellings in each district was, therefore, di- vided into four groups in regard to the four categories of "Family composition." These four groups were then divided into eight according to its "Participation in community associations." The eight groups just mentioned above were divided again into twenty-four in relation to the three categories of "Distance to the nearest health center." Finally, these twenty-four groups were divided into 120 groups in the case of San Antonio, which has five sectors, but were not divided fur- ther in the case of Quebrada Honda, which includes only one sector. Once the dwellings had been ordered through the procedure pre- viously described, the samples were obtained by systematic random sampling. Thus, two samples of 100 dwellings were chosen for San Antonio, and one sample of 50 dwellings was selected for Quebrada Honda. 38 The following tables present in detail the number of persons in- cluded as a part of the sample in relation to the total number of persons in the population (Table 3.1) as well as a break-down by age of the persons that participated in this research project (Table 3.2): Table 3.1. Number of persons and dwellings of the population and sample population in the districts of San Antonio and Quebrada Honda. L POPULATION SAMPLE AREA Dwellings No. of Persons Dwellings No. of Persons San Antonio 1,176 7,221 Sample 1 100 646 Sample 2 100 588 Quebrada Honda 222 1,291 50 312 Table 3.2. Sample population according to developmental age groups in the districts of San Antonio and Quebrada Honda. SAMPLE* No. of less than ages over AREA Dwellings persons age 7 7-15 age 15 San Antonio Sample 1 100 646 126 174 356 Sample 2 100 588 113 153 322 Quebrada Honda 50 312 54 84 74 39 A representation of the distribution of the dwellings throughout the districts of San Antonio and Quebrada Honda can be seen in Figures 3.3 and 3.4. In summary, the dwellings selected through systematic random sampling for the purpose of this study accurately represent the popu- lation in its selected characteristics. Therefore, the findings reported in Chapter Four can be generalized to the entire population. Instrumentation The different means employed for measuring the disabling condi- tions and rehabilitation factors in the districts were designed accord- ing to the nature of each one of the three approaches previously described in this chapter. Each instrument is presented at this point. The Household Survey A general health questionnaire was developed by IRSEN-M.S.U. and IRSEN-C.R. for the purpose of evaluating the pilot implementation of the Comprehensive Health Model. A specific section regarding disability and rehabilitation was exclusively developed according to the objectives of this study and built into the more general health questionnaire. This section specifically sought to identify functional limitations and to assess the different dimensions of the resultant disability (see Appendix A)- Both questionnaires, the General Health Questionnaire and the Household Questionnaire on Disability and Rehabilitation, were con- ducted as a single questionnaire, both contributing to and complement- ing one another in the fulfillment of their particular objectives. The areas investigated by the General Health Questionnaire, 40 including disability and rehabilitation, were the following: I. Identification Data 11. General Information about the Household II.A. Housing II.B. Nutrition II.C. Environmental factors II.D. Hygiene habits II.E. Family planning II.F. Communication and information system II.G. Habits and needs III. Individual Health Status > 111. . Antecedents III.B. Actual state of health III.C. Medical assistance III.D. Functional limitations III.E. Pre-natal control and births III.E. Child development and growth control III.G. Immunizations IV. Mortality V. Psychosocial Aspects V.A. Mental disorders Disorders in preschool age children Disorders in school age children Alcohol consumption Norms of punishment Harmful patters of interpersonal relating <<<<< 'I'II'I'IDOW VI. Sociological Aspects VI.A. Employment and income VI.B. Migration , VII. Disability and Rehabilitation VII.A. Persons with important functional limitations VII.B. Rehabilitation care received VII.C. Perception of limitation VII.D. Existing dependency VII.E. Assistance concerning limitation VII.F. Activity level VII.E. Attitudes The questionnaire which specifically pertains to this study (see Appendix A), or Household Questionnaire on Disibility and Rehabilitation 41 includes Sections III.A. and 111.0. regarding "Individual Health Status," all of Section V. on "Psychosocial Aspects" (with the excep- tion of V.D. "Norms of punishment"), and the complete Section VII on "Disability and Rehabilitation," of the General Health Questionnaire. Sections III.A. and III.D., as well as all of Section V. identify the physical, psychological, developmental, and/or social functional limitations present in the dwellings, which are assessed later in Section VII,irl regard to the rehabilitation care received, the activity level and self-care of the disabled (Sections VII.D., VII.E., and VII.F.), and the attitudes toward the limitation (Sections VII.C. and VII.G.). A review of the literature regarding the problem of assessing disability and rehabilitation, particularly the World Health Organi- zation approach explained in Chapter Two, assisted in the identifica- tion of the variables which were to be investigated. These variables were related to the three stages of the disability process: (a) Impairment, (b) Functional Limitation, and (c) Disability, as well as to the different categories and levels by which the extent of the resultant disability was to be assessed (see Figure 2.3 in Chapter II). Within this framework, the Household Questionnaire on Disability and Rehabilitation focused specifically on the stages of functional limita- tion and disability. Functional limitations were recorded in the following areas: physical, mental, preschool and school age limitations, alcoholism, and harmful patterns of interpersonal relating. The criteria used in the selection of these areas was due mainly to the need to include those limitations more prevalent in a rural district at the household level. 42 In order to arrive at the decision of which types of functional limitations would be included in the questionnaire several authorities in the districts were consulted. The physicians involved in the Compre- hensive Health Program, for instance, reported no incidence of drug addition in the communities. On the other hand, they stressed the need of including a section on functional limitations related to exces- sive alcohol consumption due to the great incidence of alcoholism in the towns. The civil authorities, also, described juvenile delinquency as an almost non-existant phenomenon in the area. They reported, how- ever, that harmful patterns of interpersonal relating were common, particularly among males, and constituted a source of concern for the authorities in the community. The teachers made a point regarding the incidence of learning and developmental problems in the children. Therefore, the different types of functional limitations included in the questionnaire were considered to be common in the districts and worthy of being given special attention by a status and needs study on disabling conditions and rehabilitation factors. For systematic pur- poses they were classified as follows: AREAS FUNCTIONAL LIMITATIONS (Basically) PhySlcal PHYSIOLOGICAL Preschool Age (Basically) School Age PSYCHOLOGICAL Mental (Basically) { AICOhOIlS, SOCIAL Harmful Relating Figure 3.5. Basic classification of Functional Limitations. 43 These functional limitations identified through the earlier sections of the questionnaire were then classified and assessed in Section VII on "Disability and Rehabilitation." The rehabilitation care received by the persons in the past was evaluated through Section VII.B. Then, the three categories referred to as Self-care (Sections VII.D. and VII.E.), Activity level (Section VII.F.), and Attitudes regarding the limitation (Sections VII.C. and VII.G.) were analyzed at three different levels: Individual Level, Family Level, and Community Level. Figure 3.6 was developed for the purpose of securing a high level of content validity to items included in the questionnaire. Thus, the specifications concerning the item content and form in the questionnaire were written down and planned carefully prior to the preparation of the first draft of the questionnaire. These specifications were derived from the basic elements of the W.H.O. approach to disability prevention and rehabilitation (see p. 15 in Chapter Two), and organized in terms of the categories and levels described in the previous paragraph (see Figure 3.6). The descriptive nature of this study made it particularly relevant to stress content validity over the other types of validity: predictive and construct validity. Therefore, although no quantitative estimates of the validity of the questionnaire can be offered, face and content validity can be determined by a thorough inspection of the items as well as of the categories and levels within which those items were developed. Ultimately, the content validity of the questionnaire can be checked against the basic elements of the approach to disability prevention and rehabilitation from which these categories and levels 44 .ocwoccowumoao me» »o __> cowuomm cm msou_ co movcomoumu use mpo>on An m.m»—m:< acoucou .m.m ac:m.u m:o_uepoc peeomcoacouew cm A...pe_oom .mc:m_o_v o>ona on» we aucoaaoca .om mocmu.:m pascomcm .oN mmo_>com crucum co mocopcoaxm ~.w._~> mopup>vuom »u_:=esoo pocovmmomona .o~ course we mmcmm o.w.-> =_ copuma_omucma m.n.__> “mavewauao :* mumvmm< .m.-> =o_umamep_ momum>wuoe sec: xupppnos :— mumwmm< n~.o.__> mo copuaoocma m.u.__> c, cowuua_opucma e.u._~> mcpeoou c? mum_mm< u~.o.-> >h~zzzzou o>ope ecu we xocoaaocm .nm mocec_:u puscouc~ .am m:o_u-oe mmop>com —ocomconcou:_ cw _mcommmowonm .n~ c.mcum co mocopcoaxm m.u._~> “newcpmuao cw muu.am< .m.-> course we omeom e.w.-> xumppnoe cw muupmm< o~.o._~> cowumupspp monogo upogmmaog acmmmonu cw mumvmm< n~.o._~> co cowuaoocoa ~.u._~> :— mm~=~>wunomm< m.d._~> mcpooou :. namvmm< a~.o._~> >n—zone use we hocoaaocd .mm monocpaa meowum_oc pmscouc_ .em pmcomcoacoucw cw moov>com sputum co mocmwcoaxw m.w._~> Focopmmomoca .o~ covacapm>oiu_om new upomnogxsm; cm xup>puoowno .N »o museumpmme mxoom .m.__> too: .~ A...coogcon;m_oc oocmumwmma cuss: ”course no omcom .u.__> .vcsoniosozv uaozu_3 »u___aoz o~.o.__> =o_u~uws_p xumpwnoe co oucmm ~.u.~_> e—om mommoca n~.o.~_> co cowaaoocoa ~.u.-> oe_» co om: H.n.__> upom wooed a~.o._~> 4<=o_>~az_ mmoah.»»< 4w>m4 >»_>_»u< m¢u4 m m _ m o c u h < u 45 were derived (W.H.O., 1976, pp. 7-12). A numerical range concerning the degree of existence of disability- related aspects was built into the pattern of response for each one of the items of Section VII. A lower number in a specific item's range indicated a severe disability-related condition, while a higher number implied a relatively mild or non-existing condition. Typically, it ranged from 1 to 3 as can be seen in the following example: VII.F.4. Regarding the normal work activities (outside the house, house work, studying). there are many activities that the person cannot perform as a result of the limitation. [Z] 1 There are some activities that the person cannot perform, or they take a great deal of effort. [:3 2 There are very few activities that the person cannot perform. [:J 3 This range of item response, within the context of the different categories and levels, constitutes the foundation for the description of the resultant disability. A first draft of the Household Questionnaire on Disability and Rehabilitation was piloted through a sample of fifteen households in Nicoya County - outside the geographical boundaries of the districts participating in the study. Based on the results of this pilot test of the questionnaire, all the items were qualitatively reanalyzed regarding content and form and a revised draft was produced. Due to the nature and short length of the questionnaire it was not possible to derive a reliability coefficient of the instrument. How- ever, in order to increase the degree of scorer reliability, printed detailed instructions were handed out well in advance of the scheduled 46 time for the field work and several training sessions were conducted for learning how to accurately record the desired information. The “Field Manual" used for the training of the interviewers in- cluded the following sections: General approach to the study Organization of the research General concepts and definitions (such as sample, dwelling, respondents, etc.) Content of the questionnaire and recording procedures Detailed description of main functional limitations researched through the questionnaire (C.C.S.S., 1977). 01-9 wNi—t During the one-week training period prior to the field work, the questionnaires were distributed to the interviewers, and each one of the sections of the Field Manual was carefully reviewed. By the end of the week all the interviewers were able to show their proficiency in handling the questionnaire by performing simulated interviews under close supervision. Finally, the questionnaire was administered to the whole sample of dwellings: San Antonio 1 and 2, and Quebrada Honda 1 (see Table 3.1). The Children Evaluation The children evaluation was adopted as a part of the study design in an attempt to secure an in depth assessment of the disability situa- tion in the districts which the household survey by itself could not offer. In choosing the appropriate instruments for measuring the func- tional development of children younger than six years of age many cultural considerations were taken into account. As it was discussed in ChapterTwo, a very careful selection of the instruments was neces- sary in order to control those intervening variables which are always 47 present in cross-cultural research. Also, the tests chosen for this study needed to provide the best possible assessment of the children in areas such as gross-motor and fine-motor development, language and intelligence, visual-motor integration, and social skills, etc. Based on these considerations the following three tests were selected: 1. The Denver Developmental Screening Test, DDST 2. The Wechsler Intelligence Scale for Children, WISC 3. The Beery's Developmental Test of Visual-Motor Integration, VMI The Denver Develgpmental Screening Test, DDST. This test was de- vised to provide a simple method of screening for evidences of slow development in infants and preschool children. In the selection of the items that constitute the test, twelve well-known developmental tests and preschool intelligence tests were surveyed. Then the 105 items finally selected were classified under four different areas: gross motor, fine motor-adaptive, language and personal-social (see Figure 3.7). The process of standardization of the DDST was carried out with a sample of 1,036 children in Denver, Colorado, between the ages of 2 weeks and 6.4 years (Frankenburg, 1967, pp. 188-189). The test-retest reliability coefficient computed for the DDST over a one week interval was 0.95. Also, the percentage of agreement among examiners, or scorer reliability, ranged from 80 to 95 with the average percentage of agreement being 90. In regards to validity the DDST was found to correlate highly with the Revised Yale Developmental Schedule with the highest correspondence in the gross motor area and the poorest correspondence, although still significant, P< 0.01, in the personal- 48 DENVER DEVELOPMENTAL SCREENING TEST pm. Name 5T0 :STOMACH PERCENT OF CHILDREN PASSING u so u to DIM" SIT :smmo .. ._. .. w— PERSONAL SOCIAL FINE MOTOR-ADAPTIVE lANGUAGE GROSS MOTOF a, . a ‘5 .. .. I E . I ; - , 0 ; t . i r l o ’ t E s. .. F 5 . ' ‘ - w Q 1 2 3 . 1 § 5. . t s c v 8, a , ’ .C 6 i . :2 g . g l. ‘ 9 E < SE a ‘3 . §§ " a . i I . it ! ; > a: -E ‘: s . g: .. S '” ‘3’ . _ - ,—- r a . i :5 »“ - I 3 :5”— g _ . ‘ . H 5 > I . ~ . :,E 51 .'-' -'—4 , .. E g <.‘~ :Li ' r g a] : g u: ‘2’ g > . r 0 ‘ 5 4 i E #2 7.» ‘ > g g : g 1 r: 2 H - u- L g 4 g 2 . E 1,: . _. . 9 r g, 3 g .4 E z - '. ' ' >5 - ' S s 3 31’!“ .Lgl g i i r; 9 . fl 3 g 2 2»; pg E 3 IF: u 5g -1 a g 3E: _. a . 3 t; . z z 5 3 a H 6 P; !> i ,. ’ g a ‘ : 2 ‘3 LJ 2 s g T § I m 3 ’ ,._ 3 v " l r— : - - ,; r . _ z _ 55 I 'J l E H - g: . s _ _ 2 E i 5 __1 _ I . g a-g 9 1.; __ will! mm ()4 unmmo’lmw W I 0"!me 5 ‘ RAYS PAY A (All Ills tn: to sum nm S!" m sums norm on l' ‘b 0% 9L - * )- $9 "2' ml MID H~D“QI,MdCHW(-— "I K) I mm:- J I C ”III i1 TVDOS' 'IVNOSIBI iAlIlVCV‘IOIOW JNH IOVI’IONV‘I .OIOW $90.9 [IVS aim—um -._" 'm Figure 3.7. The Test Form of the Denver Developmental Screening Test (copyright 1969, William K. Frankenburg,M.D. and Josiah B. Dodds, Ph.D., University of Colorado Medical Center) 49 social area (Frankenburg, 1967, 1971). Since its publication in 1967, the DDST has been extensively used throughout the United States and in English~speaking countries. The Reference Manual and the Test Forms have also been translated into Spanish, thus making it available to Spanish-speaking countries. How- ever, the Spanish version of the DDST continues to utilize the original DDST development norms which have not yet been adapted to the standards of different cultural areas. In the National Children's Hospital in Costa Rica, which operates under the Social Security System, the DDST has been successfully used by the medical staff for diagnostic purposes during the last two years. For these reasons, and despite the fact of not having been stan- dardized yet in a Spanish-speaking country, the DDST was considered the most complete developmental test available for studying the children in this study. When looking at the family background of the 1,036 children which constituted the sample used in Denver for standardization procedures, it was possible to observe the similarities and differences of results among children whose fathers belonged to different occupational back- grounds. By comparing the norms obtained for children whose fathers were in professional, managerial, and sales occupations (white collar) in relation to those whose fathers were in skilled or unskilled jobs, service jobs, and unemployed (blue collar), the results were the following: there seemed to be no consistent trends favoring either group in the areas of gross motor, fine motor-adaptive, and personal- social. Regarding language development, however, after the age of two years children whose fathers' occupations were in the white-collar 50 category performed many language items sooner than children whose fathers were in blue-collar jobs (Frankenburg, 1967). These results seemed to indicate that in testing developmental traits through this test, the existing cultural differences in the DDST population (”(1 not significantly influence the results in most developmental areas with the exception being in the area of language. Taking this fact into account, the Denver Developmental Screening Test was adopted as one of the three tests to be used for the evaluation of the children in the districts. The Wechsler Intelligence Scale for Children, WISC. This test is the most well-known intelligence test for children available at the present time. It was originally designed in 1949 by David Wechsler for children between the ages of 5 and 14 years. The WISC provides verbal and performance scales which include a total of 12 different measures or subtests (Wechsler, 1949). The WISC was standardized in its Spanish version in Puerto Rico. A sample of 128 children from San Juan, Santurce, and Catafio in Puerto Rico was used for standardization purposes in 1951. The results of this research study showed reliability and validity coefficients simi- lar to those of the original English version (Wechsler, 1951,.pp. 90-129). In Costa Rica the psychologists of the Social Security System have been using this Spanish version of the WISC for many years, con- sidering it the most reliable intelligence test available for children in the country. Based on these facts, the verbal scale of the WISC was selected for the purpose of measuring intelligence in the children, ages 4 to 6, 51 of the districts. The verbal scale consists of the following six sub- tests: Information, Comprehension, Arithmetic, Similarities, Digit Span, and Vocabulary. The performance scale had to be eliminated from this study due to the lack of materials necessary for adequately admin- istering it in a rural location. In making use of the WISC, the following considerations needed to be taken into account: 1. A more recent version of the Wechsler Intelligence Scale was published in 1967 for children of ages 4 to 6%; however, it could not be used in this study because there is no Spanish adapta- tion in the present time (Wechsler, 1967). 2. Caution is required in interpreting the results of the WISC because the means found in standardizing the test with the American and the Puerto Rican populations did not exactly coincide; in fact, it was found that the mean for children in Puerto Rico falls about ten points lower than the mean computed for American children. Fur- thermore, only the verbal scale was used in the present study, which decreases the level of reliability of the test. The Beery's Developmental Test of Visual-Motor Integration, VMI. This paper and pencil test, developed in 1967 by Keith Beery and Norman A. Buktenica, consists of 24 geometrical forms which are arranged in an order of increasing difficulty (Beery, 1967). '.The Beery can be administered to children between the ages of 2 and 15 years although it was originally designed for preschoolers and school children in the first grades. The purpose of the VMI consists of evaluating the development of visual-motor behavior in children by analyzing the 52 degree of integration of other behaviors such as visual perception and motor coordination. The VMI has proven to be a reliable test in the United States as well as in other nations. Georgas and Georgas (1972), for instance, found that the VMI had a reliability coefficient ranging from 0.66 at age six to 0.80 at age ten in a study conducted in Athens, Greece. Regarding validity, in the American standardization of the VMI a correlation of 0.89 was found between the Beery scores and the chrono- logical age of the children tested. Also, a correlation coefficient of over 0.90 was found in relation to the children's mental age (Beery, 1967). The VMI seems to be particularly adequate when utilized in cross- cultural research because of its use of geometrical forms instead of numbers or letters which ensures a high degree of familiarity with the figures of the test on the part of children coming from different pre- vious experiences and backgrounds. In the study conducted by Georgas and Georgas with Greek children from 16 schools, public and private, in metropolitan Athens it was found that there was no difference between the Greek and American means on the VMI for either sex at age 6 or 7 (In L. J. Cronbach, 1972, pp. 217-222). The VMI has also been used in Costa Rica for several years al- though no attempts have been made to adapt it to Costa Rican norms. Based on these facts the Beery's VMI was incorporated into the study design for the children's evaluation and was administered to all the preschoolers, ages 4 to 6, in the sample. In sumary, the DDST, the WISC, and the VMI were the tests chosen to be given to the children in the districts. The number of children that took each one of the tests can be seen in Table 3.3. These children represent the complete sample 1 for San Antonio and Quebrada Honda of ages 0 to 6. Table 3.3. Number of children assessed with the DDST, WISC, and VMI tests, by category according to sex and age. SEX AGE - TESTS Male Female 0-2 2-4 4-6 Totals DDST 69 71 42 51 47 140 WISC 23 23 - - 46 46 VMI 23 23 - - 46 46 The Structured Interviews The structured interviews served the purpose of collecting infor- mation concerning current practices and resources utilized by and/or available to the communities in dealing with disability and rehabili- tation issues. It was necessary to add these interviews to the data gathered through the Household Survey and the Children Evaluation in order to complete the status and needs pictures of the districts. The structured interviews were designed with a two-fold purpose: to take a look at those practices and resources utilized by the people in the communities, as well as to consider those potential practices and resources which are available, but for any particular reason are not being fully used. two different types of structured interviews were devised. In order to accomplish this task The first type included in its design all of the 250 households which were chosen as a part of the sample for the Household Survey. The second 54 type, on the contrary, focused exclusively on three key persons in the districts whose professional competence and experience in dealing with disability and rehabilitation issues in the area made their responses highly valuable in the context of the rest of the data gathered in this study. The household interviews were coordinated with the administration of the General Health Questionnaire described earlier in this chapter. Thus, Section 11.6. of the questionnaire on "Habits and Needs" provided the appropriate format for gathering the opinions of the pe0ple in the towns regarding the following issues: Awareness of the presence of disability in the community and quality of rehabilitation services. Quality of medical services. Quality of educational system. Quality of family diet. Quality of housing conditions Quality of working situation. 0101th I—i Two questions were asked in relation to each area; one concerning its impact on the members of the household, and the other regarding its impact on the life of the community. One final question was added at the end dealing with potential action for bringing about changes in the system (see Appendix B). The inclusion of the household interview within the General Health Questionnaire implied that all aspects regarding instrument development, field manual, training of interviewers, etc. were conducted in a simi- lar fashion to the ones already considered in the description of instrumentation of the Household Survey on Disability and Rehabilita- tion. The interview of the three prominent professionals in this parti- cular rural area was the counterpart to the interview of households. 55 The persons interviewed were: 1. The Director of the Rural Community Comprehensive Health Program. 2. The Senior Principal of the P020 de Agua Elementary School in San Antonio. 3. The Head of the Social Work Unit in the Hospital la Anexion in Nicoya, Guanacaste. These interviews were planned in advance, adopting an open- 4 question format to allow for a maximum instrument potential in record- ing the information. There was a common denominator in the questions asked to each professional inasmuch as they were all concerned with the basic core of this study which centers on disabling conditions and rehabilitation factors. However, a large segment of each interview focused on the particular experience of every person, and the impact of his/her specialty area on the disability picture of the districts. The interviews of these key individuals were recorded on the spot and are discussed in Chapter Four. Procedure The field work for the Household Survey on Disability and Rehabili- tation was conducted by a group of 25 medical, psychology, and nursing undergraduate students from the University of Costa Rica. Each student played the role of interviewer, visiting a number of the dwellings chosen as a part of the sample. The interviewers were trained to ob- serve and record appropriate infbrmation regarding functional limita- tions and resultant disabilities present in the households as well as to transcribe the respondent's replies to the questionnaire. The field work stage of this research study was carried out during a period of four weeks. Throughout that time, and for two weeks after- wards, discrepancies regarding location of the dwellings, membership in 56 households, mistakes in recording procedures, etc. were corrected by visiting those specific households for a second time. This effort, however, was limited due to the lack of sufficient resources allocated to this stage of the project. For a month and a half following the field work the staff of IRSEN-C.R. collaborated in the process of coding the data gathered; during this time, a Costa Rican physician diagnosed the cases where there was a physical functional limitation based on the information collected by the General Health Survey (see page 118 in Appendix A). The developmental and psychological evaluation of children younger than 6 years of age was carried out by undergraduate students in psychology, who personally evaluated each one of the children in their assigned households. The group of 40 psychology students from the University of Costa Rica that participated in the project was care- fully trained by the author regarding the use of the chosen psychologi- cal and developmental tests mentioned previously in this chapter. Besides administering the tests in the children's homes, the psychology students recorded their personal observations regarding the child's behavior during testing. In order to approach these observa- tions in a systematic way the students received specific training con- cerning the types of abnormal behaviors that needed to be recorded. Abnormal behavior was defined as a set of actions and/or the outward disposition on the part of the child (or the parents and relatives) which seriously interfered with the normal administration of the tests in the following areas: 57 1. The child's behavior during testing: . Child shy, silent, nervous... . Uncooperative child... . Child hyperkinetic and/or inattentive... . Child not confident and/or dependent on parents/others... DOUG! 2. The child's mental and physical disposition at the time of testing: a. Child affected by illness or pain (viral infec- tion such as cold, chicken pox, etc.; bacterial infection such as wounds, eye infection, etc.; head or stomach aches...) 6. Child affected by mood (tired, sleepy, overly excited...) The child's immediate environment during testing was also recorded as a part of the observations, when it was considered that it had affected the child's performance in the test. Two main categories were reported in this area: a. Parental pressure, anxiety and/or overly critical attitude... b. Disturbing physical and/or social surround- ings... Finally, the students were asked to include as a part of their observations the case of those children who obviously presented a functional limitation in the following areas: a. Language limitation (speech handicap or immature language development) b. Sensorial limitation (sight, hearing...) c. Motor-anatomical limitation (legs, arms, fine-motor...) d. Mental limitation (extremely slow learner, lack of memory...) e. Multi-cap (more than one of the previous functional limitations) The psychological and developmental evaluation of the children was conducted in the districts during a three day period, four months in advance to the administration of the Household Questionnaire on 58 Disability and Rehabilitation. The testing situation in the homes lacked many of the conditions which are desirable ‘hl order to isolate the variables that are attempted to be measured. However, the familiar environment, as apparently disturbing as it may have seemed, contributed also to the child's feeling of personal ease and self-confidence which could not have been achieved in a foreign setting. During a period of four weeks following the evaluation of the children the tests collected were carefully evaluated, and in cases of inappropriate administration of a test, it was repeated to the child by visiting the home for a second time. Experienced staff from the Psychometrics Unit in the San Jose's main Social Security Hospital contributed to the final computation of the tests results which are presented in Chapter Four. Finally, the structured interview of the households was conducted following the same procedure previously described for the Household Survey on Disability and Rehabilitation. In the case of the structured interview to the three professionals in the districts each one of the interviews was carried out by the author of this study after six months of personal involvement in the life of the communities. Statistical Analysis The data collected for the purposes of this study were analyzed with the help of descriptive statistics such as frequencies, percen- tages, measures of central tendency (means, medians, modes), and variability measures. This analysis includes all aspects related to physical, mental, developmental and social functional limitations, 59' and the assessment of resultant disability. With regard to the information gathered through the Household Questionnaire on Disability and Rehabilitation, an arbitrary range of scores was created for the evaluation of the following categories of resultant disability (see Figure 3.6, page 44): 1. Self-Care, which comprised a measure of proficiency in performing basic daily living skills, as well as initiative taken by the person in obtaining professional assistance and/or informal guidance regarding the limitation. 2. Activity Level, as expressed by a compound measure of different aspects of "active behavior" such as use of time, range of mobility (including the variable of home-boundness), assertiveness in household chores, and participation in work and leisure community activities. 3. Attitudes regarding the limitation, as estimated by the addition of item scores related to the disabled person's perception of his/her limitation, sense of burden, and experience of strain in interpersonal relations. 4. An overall Disability-Related category, which is a compound measure of the added item scores of the three previous categories into one. This arbitrary range, adopted for describing severe, moderate, and mild or none disability-related conditions, was the product of adding up the individual numerical ranges built within each one of the items of Section VII of the questionnaire.) In cases where a sufficient number of severe disability-related conditions were found within a particular type of functional limitation, a more thorough analysis of the family and community variables involved was conducted. Some functional limitations were further divided into subtypes, as in the case of physical limitations which were subdivided according to W.H.O.'s international classification of diseases (W.H.O., 1967, pp. 3-25), and frequency and percentage counts were estimated. 60 Finally, the frequencies and percentages of different types of re- habilitation care received by the persons who presented functional limi- tations was also analyzed. The data collected through the psychological and developmental evaluation of children, aged 0-6, was analyzed in several different fashions: Frequency counts were tabulated concerning the diagnostic cate- gories offered by each test. The mean, median and mode for the dis- tribution of scores in the WISC and VMI were computed, as well as the standard deviation around the mean of the children's I.Q. scores. The children who were found to present one or more delays in the four sectors of development in the Denver Test (gross motor, fine motor-adaptive, language, and/or personal-social) were compared to those diagnosed as normal with regard to different factors such as: Distance of household to nearest health center. Participation of family members in community associations. Use of toothbrush and/or shoes by the preschool children in the family. Participation of the child in the "Growth and DevelOpment" medical consultation program offered in the district of San Antonio. 5. Physician's clinical diagnosis concerning the presence/ absence of undernourishment in the case of each individual child who received consultation in the district of San Antonio. -I> wNi—I Those factors that appeared to be associated with the presence of disability are discussed in Chapter Four in an attempt to link the disability process to possible prevention factors. Finally, the opinion survey regarding Habits and Needs, as they are experienced by the community itself, was analyzed in terms of frequencies and percentages, and compared to the "attributed needs" as viewed by the three professionals in the districts who were consulted 61 in relation to current practices and resources. Summar In this chapter, the design of the study was presented beginning with a description of the method employed in collecting the data. The following three approaches were selected as a part of the method, each of them adding to the others a different and necessary dimension for studying the status and needs of the districts with regard to disabil- ity and rehabilitation: 1. A household survey of functional limitations and resultant disabilities. 2. A psychological and developmental evaluation of children, ages 0 - 6. 3. Structured interviews regarding community practices, resources and needs. Concerning the subjects and sampling procedures utilized in this study, two samples of 100 dwellings in the district of San Antonio and one sample of 50 dwellings in the district of Quebrada Honda were se- lected through systematic random sampling out of a total population of 1,400 dwellings located in both districts. The instruments used for assessing disabling conditions and reha- bilitation factors fall under the following three categories: 1. A household Questionnaire on Disability and Rehabilitation, which was developed for the purpose of identifying functional limitations and assessing the different dimensions of the re- sultant disability in terms of the rehabilitation care received, the activity level and self-care of the disabled, and the atti- tudes toward the limitation. This instrument was patterned after the W.H.O. Model of Interventions to diminish the impact of 62 disability presented in Chapter Two. 2. Psychological and developmental testing of children using the DDST, WISC and Berry's VMI tests. In this way functional develop- ment was assessed in the areas of personal-social, language, gross and fine-motor adaptive, as well as intelligence and visual-motor integration. 3. Structured interviews were designed for the purpose of assess- ing current rehabilitation practices, resources and community needs, as they are perceived by the people of the communities themselves, or according to the opinion of three experienced local professionals whose work deals specifically with disability and rehabilitation issues in that geographical area. The section in this chapter concerned with the procedure for col- lecting the information included a description of the training undergone by the different groups of interviewers, as well as of the different aspects related to the organization of the field work and the data- processing system. Finally, a description of the statistical analysis used in this study was presented. It includes the different types of descriptive statistics employed - frequencies, percentages, measures of central tendency (means, medians, modes), and variability measures - and the ways in which they were used in analyzing all aspects related to functional limitations and resultant disability, as well as the reha- bilitation practices, resources and specific needs of the communities. CHAPTER FOUR: ANALYSIS OF RESULTS The objectives presented in Chapter One have contributed to the conducting of this research by restating the purpose of the study in operational terms, thus providing a concrete set of directions which are analyzed at this point. In this chapter, therefore, the analysis and interpretation of results obtained in relation to each objective are systematically pre- sented, followed by a summary statement describing the main findings of the study concerning the rehabilitation needs of the two districts. Objective 1 The first objective was previously stated as "the identification of types of functional limitations present in the districts of San Antonio and Quebrada Honda, focusing on the different dimensions of the resultant disability in terms of the rehabilitation care received, the activity level and self-care of the disabled, and the attitudes toward disability" (see Chapter One, page 8). In Table 4.1 the frequencies and percentages of each type of functional limitations identified in the districts are presented. A total of 89 functional limitations were found which represent 5.76% of the total sample. The sample consisted of 1,546 persons living in the 250 dwellings surveyed. This sample represents a population of 9,512 persons who live in the districts of San Antonio and Quebrada Honda. This finding of 5.76%, much smaller than the U.N.‘s worldwide estimate of 10% disabled, seems to reflect the lack of awareness in the rural areas regarding the presence of certain types of disabilities, for example, learning disabilities. 63 Table 4.1. Types, frequencies, and percentages of identified functional limitations assessed in terms of resultant disability. FUNCTIONAL LIMITATIONS Pre- armful ASSESSMENT Physical Mental School School Alcohol Relating Assessed 32 15 3 7 22 4 Not assesseda 1 0 1 2 2 O b 33 15 4 9 24 4 Total (37%) (17%) (4.5%) (19%) (27%) (4.5%) Note. N = 89 functional limitations % of functional limitations = 5.76% (Total sample OD 1,546 persons) The 6 individuals classified as "Not assessed" were identified in the questionnaire as presenting a functional limitation but were not evaluated further due to mistakes on the part of the interviewers. b 9 of the 89 limitations were a combination of physical and 1 other functional limitation, in which case they were classified as physical. Nine functional limitations were a combination of physical and one other functional limitation. In this situation, the instruction given to the interviewer was to assess together the sum of manifestations affecting the person in terms of resultant disability and to classify the case as physical. The rationale for making this decision was the consideration of physical limitation as a more comprehensive category as well as a more pressing condition in terms of basic need for rehabilita- tion. Table 4.1 also indicates that physical, alcohol-related and mental functional limitations represent the higher frequencies in the study. Concerning the incidence of identified physical functional limita- tions, the data recorded in Table 4.2 indicate the manner in which they were categorized according to the international statistical classification 65 Table 4.2. Types, frequencies, and percentages of physical limitations according to W.H.O.'s classification of diseases (1967). CLASSIFICATION OF DISEASES F. % of total A. Nervous system and sense organs 12 37.5 1. Disease of peripheral nerves 1 3.1 2. Visual pathology: Refractive errors 5 15.6 Cataracts 1 3.1 Blindness 2 6.3 3. Auditory pathology: Deafness 3 9.4 B. Muscoloskeletal system and connective tissue 3 9.4 1. Internal derangement of joint 1 3.1 2. Rheumatism 1 3.1 3. Other diseases 1 3.1 C. Congenital anomalies affecting multiple systems 2 6.3 D. Infective and parasitic diseases: Consequences of acute poliomyelitis 1 3.1 E. Circulatory system: Varicose veins of lower extremities 1 3.1 No medical diagnosis identified 6 18.8 Missing from medical diagnosis data 7 21.9 Total 32 100.0 66 of diseases, injuries, and causes of death published by W.H.O. (1967). The greatest percentage of physical limitations corresponded to diseases of the nervous system and sense organs (37.5%), particularly in the area of visual pathology (25.0%), and followed by auditory pathology (9.4%). The classification of diSeases was based on the medical diagnosis of a physician who interpreted the data recorded in the questionnaires. In the case of 6 subjects, however, the recorded information was not sufficient for formulating such a diagnostic classi- fication, although they were assessed by the physician in more general terms regarding the need for treatment, the degree of permanence of the limitation, etc. The other 7 cases which appear as missing from the medical diagnosis data were placed in this category due to inconsisten- cies in the coding of the information. Very few of the physical limitations shown in Table 4.3 were classified by the physician as temporary, regressive, and/or episodic. This can be partially explained by the fact that the physical limita- tions expected to be recorded in the questionnaire were specifically qualified by the adjective "important," subtly implying a more perma- nent, progressive, and/or continuous type of limitation (see Appendix A, page ). This rationale seems to be confirmed also by the data presented in Table 4.4 which indicate only one case as not needing medical treat- ment, while all the others fall under the categories of indispensable or advisable continuous medical treatment. 67 Table 4.3. Frequencies and percentages of medical opinion categories regarding physical limitations. MEDICAL OPINION f. % of total A. Degree of permanence 32 100.0 1. Temporary 7 21.9 2. Permanent 18 56.2 Missing data 7 21.9 B. Prognosis 32 100.0 1. Regressive 0 0.0 2. Stabilized 13 40.6 3. Progressive 12 37.5 Missing data 7 21.9 C. Degree of chronicity 32 100.0 1. Episodic 2 6.3 2. Continuous 23 71.8 Missing data 7 21.9 Table 4.4. Frequencies and percentages of suggested medical treatment categories concerning physical limitations. MEDICAL TREATMENT ‘ F. x of total 1. Indispensable 12 37.5 2. Advisable 12 37.5 3. Unnecessary l 3.0 Missing data 7 22.0 Total 32 100.0 68 With regard to the incidence of mental functional limitations in the districts, Table 4.5 presents the frequencies and percentages of the main types of disorders classified under this title. Mental ill- ness, which was defined in the questionnaire as including all persons presenting a serious mental disorder or "insane" behavior, accounts for 50% of the total number of mental limitations. On the contrary, the cases of mental retardation and senility appear as representing smaller percentages in the population. It must be noted also that 31.8% of these cases were further com- plicated by the presence of a physical limitation. This fact seems to indicate that, according to the data collected in this study, nearly one of every three cases of individuals suffering from a mental disorder in the districts could also be expected to present an important physical limitation. Table 4.5. Types, frequencies, and percentages of identified mental limitations. TYPES OF MENTAL LIMITATIONS F. % of total Mental Retardation: 7 31.8% 1. Down's syndrome 3 13.6% 2. Other 4 18.2% Senility 4 18.2% Mental Illness 11 50.0% Total 22a 100.0% a7 of these cases were complicated by the presence of physical limitations also. In assessing the resultant disability, these cases were classified under the physical limitation category. 69 However, as explained above, for the purpose of the statistical analysis reported here, these cases have been classified as physical limitations with regard to the evaluation of resultant disability. All persons presenting a functional limitation in the sample of 250 households of San Antonio and Quebrada Honda were assessed in terms of the rehabilitation care received (Table 4.6.). The data presented in this table indicate that most of the institutional or professional assistance provided for the rehabilitation of the individuals falls under the categories of medical-oriented treatment or, even more specific, medicine treatment. For the most part, the individuals presenting alcohol-related limitations do not appear to be receiving any type of rehabilitation care. The same can be said of thesnell number of subjects classified under the categories of school -learning problems- or harmful relating types of limitations. However, in this latter situation, as with the preschool developmental limitations, the frequency of identified cases is so small that no interpretation can be justifiably derived from the data. It is noticeable that only 6% of the persons suffering from impor- tant physical limitations have received orthopaedic treatment, while according to the classification of diseases presented in Table 4.2. a much greater percentage seemed to require it or at least to be likely to benefit from it. Table 4.7 was constructed in an attempt to assess the source of initiatives related to "assistance-seeking behavior" in the case of a limitation not frequently taken to the physician as the main provider of rehabilitation care: alcoholism. 7O Table 4.6. Incidence of different types of rehabilitation care and treatment received by persons in each category of functional limitations. FUNCTIONAL LIMITATIONS Pre- Harmfu TYPES Phys. Mental School School Alcohol Relating Total Institutional: Yes 12 8 2 I 1 0 24 (37%)( (53%) (67%) (14%) (5%) (0%) (29.2%) No 20 7 I 6 20 4 58 (63%) (47% (33%) (86%) (95%)( (100%) (70.8% ProfessTbnéT’ Assistance: Yes 12 6 2 1 2 0 23 (40%) (40%) (67% (14%) 10%) (0%) (28.8%) No 18 97 1 *6 19 4 ’57 ((60%) (60%) (33%) (86%) (90%) (100%) (71,2%) Medicines: Yes 10 9 I 1 2 0 23 (31%) (60%) (33%) ((14%) (10%) (0%) ((28.0%) No 722’ 6 77? 6 19 TT’ 59 T (69%) (40%) (67%)( (86%) (90%) (100%) (72.0%) R Orthopaedic: Yes 2 0 0 0 O 0 2 E (6%) (0%) (0%) (0%) (0%) (0%) (2.5%) A No 30 15 3 7 I 4 80 (94%) (100%) (100%) (100%) ((100%)( (100%)(( (97.5%) T SpecTaTTzed M Groups: Yes 0 1 0 O 0 0 1 E (0%) (6%) (0%) (0% (0%) (0%) ((1.2%) N No 32 14 3 ‘7’ 21 4 81 100%) (94%) (100%) (100%) (100%) (100%) (98.8%) T Special train- ing,exercises orother: Yes 0 0 3 0 0 O 3 ((0%) (0%) (100%) (0%) ((0%) (0%) (3.7%) No 31 15 O 7 21 4 78 (100%) (100%) ((9%) 100%)( (100%) (100%) (96.3%) Data Missing 1 - I 2 2 - 6 Total 32 15 3 7 22 4 83 Note. N a 89 functional limitations identified in the districts. Percentages are shown within the parentheses. 71 Table 4.7. Incidence of "assistance-seeking behavior" in c0ping with alcoholism, by categories according to individual, family and community levels. LEVELS ASSISTANCE SOUGHT ndiVidual Family Community 1 7 2 Yes (6%) (32%) (% N0 21 15 20 (94%) (68%) (91%) 22 22 22 T°ta' (100%) (100%) (100%) Neither the individual nor the community appears ulbe "initiator" in "assistance-seeking behavior." In fact, it is the family of the alcoholic (in 32% of the cases) who is the principal motivating agent in attempting to find rehabilitation care for these persons. However, as it was indicated in Table 4.6, only one of the 22 individuals having these circumstances has been hospitalized, and only two individuals have received professional assistance in dealing with their situation. Furthermore. no person has been a part of an organized group such as Alcoholics Anonymous of Costa Rica, which specializes in the rehabili- tation of this type of disability. The following four tables (4.8 through 4.11) deal with the assess- ment of resultant disability for all types of identified functional limitations. By defining an arbitrary range of added item scores related to self-care, activity level, and attitudes toward the limitation, a com- pound estimate was derived for every individual in relation to each one, of these areas, thus classifying the functional limitation into one of three possible categories: mild (none), moderate, or severe disability- related condition. 72 Table 4.8 presents the frequencies and percentages of all func- tional limitations with regard to a compound estimate of individual self-care level. With the exception of the physical limitations which are evenly distributed, all other limitations seem to place their highest percentages in only one or at the most two of the disability- related categories. Table 4.8. Incidence of functional limitations, by category according to a compound estimate of individual self-care level. FUNCTIONAL LIMITATIONS ‘Pre- Harmful SELF-CARE Physical Mental School School Alcohol Relating 8 1 2 0 O 0 severe (25.0%) (6.7%) (66.7%) (0.0%) (0 0%) (0.0%) 14 6 I 7 21 4 M°derate (43.8% (40.0%) (33.3% (100.0%) (95.5%) (100.0%) Mild 10 8 0 0 1 0 _(none) (31.3%) (53.3%) (0.0%) (0.0% (4.5%) (0.0%) 32 15 3 7 22 4 Totals (100.0%) (100.0%) (100.0%) (100.0%) (100.0%) (100.0%) The severe self-care disability-related condition was defined as the inability of an individual to be independent in performing daily living skills or activities, as well as the lack of initiative shown by the individual in trying to secure some type of assistance in order to better deal with the limitation. 25% of the cases presenting physical limitations fall under this category. With regard to mental limitations, on the contrary, only 6.7% is classified as severe, a fact which can be interpreted as a possible higher degree of independence in mastering daily living activities on the part of those people. 73 The incidence of 95% of alcohol-related limitations under the moderate disability-related category is consistent with the interpreta- tion of Table 4.7 presented earlier. It seems that even though most of the alcoholic persons can generally master the skills of daily living, almost none of them has made any attempt to find professional assistance and/or informal guidance to better deal with their problem. All other types of functional limitations (preschool, school, harmful relating) are represented by such a small frequency of cases that no reliable conclusions could be drawn from these tables. In the analysis and interpretation of results concerning objective 2, however, much more significant data is presented in relation to the children's population of the districts. In regard to the activity level shown in Table 4.9, the higher percentages fall under the category of mild (none) disability-related conditions, with the only exception of mental limitations where the largest percentage of individuals is categorized as moderately disabled. This fact is particularly noticeable considering that 9 persons were identified as homebound through the questionnaire, a term which was defined as the inability to go out of the home without the help of other people. In this context, such large percentages of individuals being classified as mildly or moderately disabled could be interpreted as a considerable degree of flexibility on the part of the communities to keep these persons somewhat active and involved in social life in spite of their sometimes precarious self-care needs and/or homebound condi- tion. 74 Table 4.9. Classification of functional limitations, by category according to a compound estimate of individual activity level. FUNCTIONAL LIMITATIONS ACTIVITY Pre- *Harmful LEVEL Physical Mental School School Alcohol Relating 7 I 0 1 2 0 severe (21.9%) (7.1%) (0.0%) (14.3%) (9.1%) (0.0%) 6 8 0 0 2 0 M°de”ate (18.8%) (57.1%) (0.0% (0.0%) (9.1%) (0.0%) Mild 19 5 3 6 18 4 (none) (59.4% (35.7%) (100.0%) (85.7%) (81.8%) (100.0%) 32 I4 3 7 22 4 Totals (100.0%) (100.0%) (100.0%) (100.0%) (100.0%) (100.0%) Note: 7 homebound persons were classified under physical limita- tion and 2 were classified under mental limitation. The data presented in Table 4.10 indicate that a very small per- centage of the subjects have an attitude regarding their limitation which could be associated with a severe disability-related condition. The attitude level was derived from items concerning the individ- ual's perception of his/her limitations, the personal sense of burden and the experience of strain in interpersonal relating caused by the presence of the limitation. The incidence of functional limitations according to an overall compound estimate of individual disability-related condition is indica- . ted in Table 4.11. This table was constructed by integrating into one common range all the separate numerical ranges used in describing self-care, attitude, and activity levels. 75 Table 4.10. Classification of functional limitations, by category according to a compound estimate of individual attitude level regarding the limitation. FUNCTIONAL LIMITATIONS ATTITUDE Pre- HarmfuTT _LEVEL Physical Mental School School Alcohol Relating) 2 1 0 1 2 0 severe (6.7%) (6.7%) (0.0%) _(14.3%) (9.1%) (0.0%) 4 7 1 3 4 0 "Oderate (13.3%) (46.7%) (33.3%) (42.9%) (18.2% (0.0%) Mild 24 7 2 3 16 3 (none) (80.0%) (46.7% (66.7%) (42.9%) ((72.7%)(100.0%) 30 15 3 7 22 3 Totals (100.0%) (100.0%) (100.0%) (100.0%) (100.0%) (100.0%) Table 4.11. Incidence of functional limitations, by category according to an overall compound estimate of individual disability- related condition. OVERALL DISA- TUNCTIONAE LIMITATIONS BILITY-RELATED Pre- HarmfuTT' CQNDITIQN Physical Mental School School Alcohol Relating 2 0 0 0 0 0 severe (6.3% (0.0%) (0.0%) (0.0%) (0.0%) (0.0%) 12 5 3 1 6 1 M°derate (37.5% (33.3%) (100.0% (14.3%) (27.3%) (25.0%) Mild 18 10 o . 6 16 3 (none) (56.3%) (66.7%) (0.0%) (85.7%) (72.7%) (75.0%) 32 15 3 7 22 4 Totals (100.0%) (100.0%) (100.0%) (100.0%) (100.0%) (100 0%) 76 The trend already indicated by the previous tables regarding high- er percentages of limitations categorized as moderate or mild is even more clearly shown by this table. More than 50% of the individuals appear as mildly disabled despite the more sobering facts indicated before concerning the self-care needs and the homebound condition of an important number of persons in the districts. The attitude and activity levels of the persons who suffer from different types of functional limitations seem to be the determinant factor lessening the impact of such a physical, mental, or social con- dition upon the lives of the subjects. Tables 4.12 and 4.13 were constructed in order to further analyze other variables related to the incidence of physical, mental, and [alcohol-related limitations. Table 4.12 shows a breakdown by sex and age of all physical, social, and alcohol-related limitations identified in the districts. With regard to physical limitations, Table 4.12 indicates 60% in the case of males and 40% for females. Precisely the opposite is found concerning mental limitations, where females are represented by 60% of the cases in comparison with 40% for males. There appears to be also a very low frequency of mental conditions past age 60. This result, however, can be questioned in light of the high percentages of physical limitations shown for these same age brackets (60-80 and 80+). As it was indicated previously, an important number of mental cases were complicated by a physical condition, in which case they were classified as physical. It is likely that the frequencies concerning physical limitations in older persons may also include a number of individuals who suffer from a mental disorder in 77 Table 4.12. Incidence of physical, mental, and alcohol-related functional limitations, by category according to sex and age. FUNCTIONAL LIMITATIONS SEX AND AGE Physical Mental AlcohOlism Males: 20 (60.0%) 6 (40.0%) 24 (100.0%) 0-20 years 6 (18.1%) 2 (13.3%) 2 (8.3%) 21-40 years 3 (9.1%) 3 (20.0%) 11 (45.9%) 41-60_years 1 43.0%) 1 (6.7%) 8 (33.3%) 61-80 years 8 (24.2%) 0 (0.0%) 3 (12.5%) 81+ (years 2 (6.1%) O (0.0%) O (0.0%) Females: 13 (40.0%) 9 (60.0%) 0 (_(0.0%) 0-20 years 3 (9.1%) 3 (20.0%) 0 (0.0%) 21-40 years 2 (6.1%) 4 (26.6%) 0 (0.0%) 41-60 years 3 (9.1%) 1 (6.7%) O (0.0%) 61-80 years 2 (6.1%) O (0.0%) 0 (0.0%) 81+ years 3 (9.1%) 1 (6.7%) 0 (0.0%) Total 33(100.0%) 15 (100.0%) 24 (100.0%) Note. Percentages are shown within the parentheses. 78 addition to their physical condition. The statistics concerning alcohol-related limitations indicate an incidence of 100% for males and 0% for females. Furthermore, nearly 80% of the alcoholic persons are between 20 and 60 years. This result clearly reflects the "machismo" tendency so rooted in the culture which compels the males to prove their masculinity by the amount of alcohol that they are able to consume. Some of the unfortunate consequences of this cultural trait have already been indicated as a part of the inter- pretation to previous tables regarding alcohol-related limitations. In Table 4.13 family and community attitude levels regarding each one of the three more frequent types of limitations are presented. As with the case of individual attitudes, the family and community attitude levels toward disability were derived from items concerning perception of the limitation, as well as sense of burden and experience of strain in interpersonal relating. Regarding those individuals who have a physical limitation, their families seem to view that limitation as a more serious problem than the persons themselves (see Table 4.10). This can be appreciated by the fact that even though the largest percentage of cases is categorized under moderate or mild disability-related condition, 56.2% of the limi- tations are viewed by the families as moderate, while four out of every five physical limitations are perceived as mild by the individuals themselves. The families' attitudes regarding mental limitations coincide very closely to those of the persons who experience the limitation. This is not the case with alcohol-related conditions, where 77.3% of the families categorize the problem as moderate or severe, compared to the 79 Table 4.13. Incidence of physical, mental and alcohol-related functional limitations, by category according to separate compound estimates of family and community attitudes regarding the limitation. TLTN'T—TIONAL LIMIT‘TTONS ATTITUDES Physical Mental AlcOholTsm Family: 7 0 6 Severe (21.9%) (0.0%) (27.3%) 18 8 11 Moderate (56.2%) (53.3%) (50.0%) 7 7 5 Mild (21.9%) (46.7%) (22.7%) 32 15 22 Total (100. %) (100.0%) (100.0%) Community: 2 3 4 Severe (11.8%) (27.3%) (28.6%) 8 5 8 Moderate (47.0%) (45.4%) (57.1%) 7 3 2 Mild (41.2%) (27.3%) (14.3%) a 17 11 14 Total (100.0%) (100.0%)( (100.0%) aIn the case of 27 functional limitations (15 physical, 4 mental, and 8 alcohol-related), people in the families offered no opinion con- cerning community attitudes toward the limitation of a family member. 80 figure of 27.3% which represents the way the alcoholic individuals classify themselves according to the same two categories. Regarding the community dimension, there is a very high rate of non-response (39%) due to the fact that, in many instances, the people interviewed in the families offered no opinion concerning community attitudes toward the limitation of a family member. The data gathered on community attitudes, however, Offers some interesting evidence concerning community attitudes as compared to family or individual attitudes. While only 21.9% of the identified physical limitations were viewed by the families as mild, 41.2% were placed under this same cate- groy by the community. This discrepancy might logically be interpreted as a lack of awareness on the part of the community concerning the mag- nitude of the limitation or the sense of burden and experience of strain in family relationships caused by important physical limita- tions. With regard to alcoholism, however, there seems to be a similar pattern of response between family and community attitudes. In fact, the percentages for each category (mild, moderate, severe) are prac- tically the same, although they differ widely from those corresponding to the attitudes of the alcoholics themselves (see Table 4.10). Objective 2 The second objective of this study was previously stated as follows: "Conducting of a more complete assessment of the functional development of the children in both districts, ages 0-6, in the areas of personal- social, language, fine and gross motor development, as well as 81 intelligence and visual-motor integration" (see Chapter One, page 8). Table 4.14 indicates the developmental status of children in San Antonio and Quebrada Honda according to the diagnostic categories of the Denver Developmental Screening Test, DDST. The percentages repre- senting each category show a high degree of stability across the table. The estimate of 64.5% of children classified as normal appears to be what would generally be expected from a normal distribution, especially if we consider the relatively high percentage of children categorized as untestable, meaning by this that they refused to cooperate with the examiner during testing although no diagnosis of abnormality could necessarily be applied to them. The DDST diagnostic terminology identifies as "abnormal” any child who presents a two-tests-delay in at least two sectors of development (gross motor,fine motor-adaptive, language and/or personal-social). while the term "questionable" applies to all children who show a two- tests-delay in one sector of development only, as diagnosed by DDST standards (Frankenburg, 1973, p. 26; see also Figure 3.7 in Chapter Three, page 48). The sample of 141 children tested with the DDST represents 10.4% of the total population of children, ages 0-6, in the districts. As indicated in this table, 4.3% of the children were diagnosed as abnormal. This estimate, however, would tend to be higher in light of the relatively large percentage of children categorized as questionable (21.3%). These results correspond closely to the following general statement issued by the United Nations, U.N., in its Report on Children: "It is estimated that 5 per cent of the child population suffers from severe handicaps, whereas an additional 10 to 15 per cent may need 82 Table 4.14. Incidence of different overall diagnostic levels attained by children on the Denver Developmental Screening Test, by category according to district. DDST OVERALL San Antonio Quebrada Honda Total DIAGNOSTIC LEVELS n = 103 n = 38 N = 141 65 26 91 Normal (63.1%) (68.4%) (64.5%) 4 2 6 Abnormal _(3.9%) (5.3%) (4.3%) 22 8 3O 'Questionable (21.4%) (21.1%) (21.3%) 11 2 13 Untestable (10.7%) (5.3%) (9.2%) 1 O 1 Missing Data (1.0%) (0.0%) (.7%) 103 38 141 Total (100.0%) (100.0%) (100.0%) Note. San Antonio population Quebrada Honda population Total population 1,150 children ages 0-6 (approx.) 200 children ages 0-6 (approx.) 1,350 children ages 0-6 (approx.) 83 special attention so as to overcome less severe handicaps" (U,N, 1976). In Table 4.15, the frequencies and percentages of the different diagnostic levels attained by the children are presented according to each onetyfthe four sectors of development. The diagnostic categories for individual sectors were defined'flncthe purposes of this study as follows: (a) Normal: no delays, (b) Abnormal: at least two delays within a sector, (c) Questionable: one delay within a sector only, and (d) Untestable: two or more "refusals." Table 4.15. Incidence of different diagnostic levels attained by children on Denver Developmental Screening Test, by category according to four sectors of develOpment. SECTORS OF DEVELOPMENT DDST DIAGNOSTIC Fine motor- Personal- LEVELS Gross Motor Adaptive Language Social 129 112 119 134 Normal (91.5%) (79.4%) (84.4%) (95.0%) 1 11 12 4 Abnormal (.7%) (7.8%) (8.5%) (2.8%) 1 9 5 2 Qgestionable (.7%) (6.4%)_ (3.5%) (1.4%) 10 9 5 1 Untestable (7.1%) (6.4%) (3. %) (.7%) 141 141 141 141 Total (100.0%) (100.0%) (100.0%) (100.0%) It is clear that the percentage of normal children found in the areas of gross motor and personal-social development is much higher than 90%. On the contrary, there appears to be a significantly smaller number of children diagnosed as normal in the fine motor-adaptive and language sectors (79.4% and 84.4%). Accordingly, the rates of "abnormal" and "questionable" categories are much higher in these two sectors than those corresponding to the gross motor and personal-social sectors. 84 The lower rates of untestable children in relation to the language and personal-social sectors of development reflect the fact that many of the individual tests of the DDST in these areas do not demand a great deal of activity from the child and/or can be passed by report from the parents. The gross and fine motor developmental areas, on the contrary, require active participation from the child, and is clearly noticeable in the results when a child refuses to cooperate. Table 4.16 was constructed in order to indicate the examiners' observations regarding disrupting conditions during testing, such as child's abnormal behavior (actions or outward disposition) and disturb- ing physical/social surroundings. A large number of children were found to Show behaviors such as shyness , silence, nervousness, uncooperativeness, etc. , which may reflect the fact that they had never been tested before. Also, most of their past experience in dealing with strangers who examined them was related to home-visits conducted by medical staff who would cause them discom- fort by treating their wounds, giving shots, or making them drink different types of unpleasant tasting medicines. Further, considering that the testing was conducted in the child's natural environment, surrounded by relatives and all kinds of domestic animals, and usually sitting in a smoke-filled kitchen where the only table in the house had been placed, it is to be expected that the examiners would report the types of frequencies of disrupting environ— ment that are shown in Table 4.16. All of these abnormal conditions, however, need to be analyzed in the context of the constraints imposed on a study which attempted to assess functional development of children in rural areas. The 85 Table 4.16. Incidence of disrupting conditions during psychological testing, as observed by examiners. DISRUPTING BEHAVIOR Frequencya Totala A. Child's disrupting behavior: 1. Shy, silent, nervous... 37 (26%) 140 (100%) 2. Uncooperative... 28 (20%) 3. Hyperkinetic, inattentive... 11 (8%) 4. Not confident, overly dependent... 20 (14%) B. Child's disrupting outward dispostion: 1. Affected by illness or pain... 9 (6%) 140 (100%) 2. Tired, sleepy, overly excited... 4 (3%) C. Child's disrupting environment: 1. Parental pressure, anxiety, overly critical attitude... 16 (11%) 140 (100%) 2. Disturbing physical and/or social surroundings... 27 (19%) aPercentages are shown within the parenthesis. Note. Disrupting conditions overlap (they should not be added up vertically). 86 isolation of the children during testing in a laboratory type of environ- ment would have made the experience much more traumatic on the child, and possibly decreased the reliability of the results. The incidence of physical and mental functional limitations observed by the examiners during psychological testing are represented in Table 4.17. It should be noted that the frequency of cases of language immaturity found in children older than 3 years is very large. In Table 4.18 all those children presenting language limitations (9 language immaturity cases and 2 language-sensory "multicaps") are examined in relation to their diagnostic level attained in the DDST Language sector. Table 4.17. Incidence of functional limitations observed by examiners during psychological testing. OBSERVED FUNCTIONAL LIMITATION Freguency % of total Language limitations (immaturity) 9 11.8%a Sensory limitations 1 .7% Motor-anatomical limitations 4 2.8% Mental limitations 2 1.4% "Multicap" (more than one limitation) 2 1.4% Total - 18 12.8% aLanguage immaturity was recorded in children older than 3 years only. n = 76. (All other observed functional limitations apply to the whole sample tested. n = 140.) 87 Table 4.18. Observed language limitations compared with language diagnostic level achieved by children on the Denver Developmental Screening Test. DDST LANGUAGE DEVELOPMENT DIAGNOSIS Frequencya Totala Abnormal 5 (45%) Normal 6 (55%) 11b (100%)_ Note. n = 76 children older than 3 years. aPercentages are shown within the parentheses. bThis total represents 9 language limitations + 2 multicap (language-sensory) observed by examiners during psychological testing. The results indicate that only 45% of the children were considered "abnormal" according to DDST standards. However, this can be explained by the fact that the language sector in the DDST relies mainly on a "conceptual" understanding of the language. In this regard, most of the children reported by the examiners as immature were found to be correct in the mastering of concepts although very poor in language articulation and proper enunciation of words, just as it would be ex- pected from children of a much younger age. As a whole, the incidence of abnormality shown by the Denver Developmental Screening Test appears to be related to the experience of cultural deprivation in a significant number of homes in the dis- tricts. Many cases were reported of children older than 3 years never having taken a pencil in their hands or playing with toys before, not knowing how to count or tell the colors, and even lacking the ability to properly answer easy questions seemingly because they are never paid much attention to as individuals by parents or relatives. The analysis of I.Q. scores according to the WISC (Table 4.19) 88 shows a perfectly normal distribution with a mean of 97.125 and a standard deviation of 12.21. As compared to the norms of the WISC in the United States, the mean of the distribution of scores in this study is only about 3 points below the U.S. standard mean, and 7 points above the mean found for children in Puerto Rico (see Chapter Three, page 50). The standard deviation computed for the children population in San Antonio and Quebrada Honda is 2.79 points smaller than the WISC's standard deviation of 15 as computed for U.S. children. Table 4.19. Frequencies and percentages of WISC I.Q. scores, by standard intelligence categories. WISC INTELLIGENCE CATEGORIES Freggency % of total Borderline (1.0. 70-80) 2 4.3% Slow-normal (I.Q. 80-90) 9 19.6% Normal (1.0. 90-110) 15 32.6% Bright-normal (I.Q. 110-120) 5 10.9% Superior (I.Q. 120-130)_ 1 2.2% Untestable 14 30.4% Total 46 100.0% N933, Mean = 97.125 Median = 95.500 S.D. = 12.210 Valid cases 32 The results of the children evaluation with the Visual-Motor Integration Test do not confOrm at all to the original norms computed by Beery in the U.S. The paramount difficulty encountered in adminis- tering the VMI was the fact that many children had not had the oppor- tunity of using paper and pencil before for scribbling, drawing or writing anything. This is not the case of most city children with 89 whom the VMI test has been extensively researched cross-culturally. Therefore, a high discrepancy was found between the children's Chronological Age and their Mental Age as identified by the Beery's VMI Test (see Figure 4.1). For these reasons the results of the VMI could not be used in describing the Mental Age of the children in the districts, although the difficulties encountered in testing them are descriptive in themselves of their situation. In Table 4.20 the I.Q. level of children who were diagnosed as "Abnormal" on the DDST's language sector is analyzed. Table 4.20. Incidence of children diagnosed as "Abnormal" on the DDST's language sector, by category according to 1.0. level. . LEVEL Less than 90 5 9O - 100 1 More than 110 - Total6 6 aThe other 6 cases diagnosed as “Abnormal" on the DDST's language sector did not take the WISC. Note. Only 1 of the 11 children diagnosed as "Abnormal" on the DDST's fine motor-adaptive sector was given the WISC. This child had an I.Q. of 77. It is unfortunate that only children older than 4 years could take the WISC, constituting a total of 32 valid cases in both districts. Thus, very few children were both diagnosed as "Abnormal" according to the DDST's language sector (12 cases) and at the same time given the WISC (6 cases only). However, it is evident in Table 4.20 that .OFQEmm on» cw cocupmzo ope new» m..¢ ppm we ammo Hz> m.xcmom one so mgucoe cw oommocho mocoom xocoaocomwu eo :omuznwcumwc xocozcocd .H.¢ weaned .mgucoe cw .A