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I IN: $6.70. .-I 0| .A v u - .45.!Otutatwfl‘t. u I: . 4.3. in... I . 1000‘.i n o I .s...u.du.:«. 1... i i . s . .3.. a!- .... . ‘1... l4 Q — ' A: Kala 01‘. 01" 0‘ Ea . . .. . u. vauhrlwuwo.“ 1 ..._.m .1. .x 1|... £3 'I ‘1’—‘. L “MARY I Michigan fitate University , J MICHI IGAN STATE UNIVER I I H H I I IIII II II w—w This is to certify that the dissertation entitled A COMPARATIVE STUDY OF SEVERAL PSYCHOLOGICAL ASPECTS OF ADOLESCENTS WITH AND WITHOUT CYSTIC FIBROSIS presented by Barbara J. Leviton has been accepted towards fulfillment of the requirements for Ph.D. Date - Februar¥_214_1983 M5 U is an Affirmative Action/Equal Opportunity Institution degree in Psycholoqy @axwng Aibert I. Rabin, Ph.D. Major professor 012771 I II I 312 293 00065 II II L MSU LIBRARIES “ .--. ‘. _ RETURNING MATERIALS: Place in book drop to remove this checkout from your record. FINES will be charged if book is returned after the date stamped below. 6’ v—v—vvvh.‘ , 7 WV :7 ":34 I- I watt 2 5 199‘ I FEB 1 4 2015 G I F I p . (.5, ,- V I T I} “‘ .a L3 l A COMPARATIVE STUDY OF SEVERAL PSYCHOLOGICAL ASPECTS OF ADOLESCENTS WITH AND WITHOUT CYSTIC FIBROSIS BY Barbara J. Leviton A DISSERTATION Submitted to Michigan State University partial fulfillment of the requirements for the degree of DOCTOR OF PHILOSOPHY Department of Psychology 1983 / 37- 667? ABSTRACT A COMPARATIVE STUDY OF SEVERAL PSYCHOLOGICAL ASPECTS OF ADOLESCENTS WITH AND WITHOUT CYSTIC FIBROSIS By Barbara J. Leviton Adolescence is considered a transition from childhood to adult- hood, but for the adolescent with a life-threatening illness, the move towards separation and the enlarging scape of the future are shaded by the threat of premature death. While all illnesses impose psychologi- cal demands on the developing adolescent, the demands of cystic fibro- sis, an inherited chronic disorder with an ultimately fatal outcome, are uniquely severe. This study attempted to understand how adoles- cents with cystic fibrosis, taking into account the special parameters of their lives, have "reconciled" their illness with particular aspects of adolescence. Twenty adolescents with cystic fibrosis and 20 adolescents without illness were compared on measures of future time perspective, separation anxiety, and c0ping and defense. It was hypothesized that adolescents with cystic fibrosis would be more attached, more defended on ego measures, and would exhibit less dense, coherent and extended future time perspectives than their well counterparts. Among the cystic fibrosis group, a number of addi- tional variables, including the severity of illness, knowledge about the disease, and the divergence between self and doctor ratings of illness, were explored. It was found that the adolescent with cystic fibrosis is more defended, using more poorly integrated pat- terns of defense, than his well counterpart; his future is not less dense or coherent, but he does not project himself as far into the future; and he is neither more attached nor less individuated. Among the adolescents with cystic fibrosis, males who know more about their disease are more coping; males who are more attached are less coping; and attached males have less dense and extended future time perspectives. Also, the less divergence between the adoles- cent's rating of his health and the doctor's rating, the more coping the adolescent. The importance of this area of research comes not only from the continually increasing life span of children with cystic fibrosis, but also from the increasingly prolonged life expectancy associated with many types of life-threatening pediatric diseases. Based on the findings, recommendations for further research, as well as treatment implications for health care providers, were discussed. ACKNOWLEDGMENTS I would like to thank Dr. Albert Rabin, my doctoral and disser- tation chairman, for his continued support and guidance over the course of my studies. I would also like to thank the other members of my dissertation committee, Drs. John McKinney, Bertram Karon and Cyril Worby, for the important contributions they each made to my graduate studies. ii TABLE OF CONTENTS Page LIST OF TABLES ................................................ vi LIST OF FIGURES ............................................... vii Chapter I. INTRODUCTION ........................................... 1 11. REVIEW OF THE LITERATURE ............................... 4 Attachment and Individuation: Adolescence ......................................... 4 Separation as a Gradual Process of Childhood ......................................... 5 Attachment and Individuation: Empirical Studies ................................. 7 Autonomy and the Concept of Time .................... 9 Future Time Perspective: Developmental View of Future Time Perspective: A Theoretical Exploration ........... 10 Empirical Studies on the Time Concept ............... 13 Other Factors Affecting Future Time Perspective ....................................... 16 Future Time Perspective: Individuation and Death ......................................... 18 3% Cystic Fibrosis: An Introduction ..................................... 20 A Developmental Perspective of Cystic Fibrosis from Infancy to Adolescence ....................... 21 The Impact of Cystic Fibrosis on the Psychological Functioning of the Child .......................... 25 The Psychological Effects of Cystic Fibrosis on Adolescents and Young Adults ...................................... 30 A Theory of Psychological Innoculation .............. 34 Coping and Defense: Introduction ........................................ 36 A Model of Ego Functioning .......................... 37 Page II. REVIEW OF THE LITERATURE (Continued) .................... Empirical Studies on the Ego Model ................... 39 Adaptation to Illness: An Empirical View ............ 42 A Proposed Model of Coping ........................... 43 III. STATEMENT OF PROBLEMS AND HYPOTHESES .................... 45 Statement of the Problem ............................. 45 Hypotheses ........................................... 46 IV. METHODOLOGY ............................................. 48 Subjects: ............................................ 48 Instruments: Separation Anxiety Test .............................. 50 Future Time Perspective Measures: Introduction ....................................... 52 Incomplete Sentences Test ............................ 54 Sequence-Arrangement Task ............................ 55 Events Test .......................................... 56 Haan's Model of Ego Functioning ...................... 56 Cystic Fibrosis Questionnaire ........................ 59 Physician and Patient Ratings ........................ 59 V. RESULTS ................................................. 61 VI. DISCUSSION .............................................. 87 Introduction ......................................... 87 Methodological Shortcomings .......................... 88 Summary of the Findings .............................. 91 Summary .............................................. 104 General Discussion and Future Research ............... 105 APPENDICES .................................................... Appendix A. Age Distribution for Male and Female Adolescents With and Without Cystic Fibrosis ......... 109 B. Separation Anxiety Test ................................ 110 C. Incomplete Sentences Test .............................. 123 D. Events Test ............................................ 124 iv E. Statistical Properties of Ego Scales: ................. Means and Standard Deviations: Student Subjects ................................... 125 Means and Standard Deviations: Adult Subjects ...................................... 126 Validity Coefficients of the Ego Scales ............... 127 Factor Analysis of Ego Processes ...................... 128 F. Cystic Fibrosis Questionnaire ......................... 129 G. Shwachman Scale ................................... -.... 130 H. Correlation Coefficients Between Attachment and Individuation Percentages and Measures of Future Time Extension Among Adolescents With and Without Cystic Fibrosis .................... 131 I. Correlation Coefficients Between Future Time Extension, Individuation and Attachment Percentages and Ego Processes for Adoles- cents Without Cystic Fibrosis ....................... 132 J. Correlation Coefficients Between Future Time Extension, Individuation and Attachment Percentages and Ego Processes for Adolescents With Cystic Fibrosis .................... 133 REFERENCES ................................................... 134 Table 10. LIST OF TABLES Properties of Ego Processes ....................... Taxonomy of Ego Processes ......................... Differences between Adolescents With and Without Cystic Fibrosis on Ego Measures ........................................ Differences Between Adolescents With and Without Cystic Fibrosis on Measures of Future Time Perspective ............. Mean Scores on Attachment and Individuation Percentages for Adolescents With and Without Cystic Fibrosis ......................... Correlation Coefficients Between Severity of Illness and Measures of Future Time Perspective, Ego Processes and Attachment and Individuation Percentages ................... Correlation Coefficients Between Divergence Scores (Adolescent vs. Health Care Practitioner Ratings) and Ego Processes ......... Correlation Coefficients Between Extent of Knowledge About Cystic Fibrosis and Ego Processes ................................... Correlation Coefficients Between Attachment and Individuation Percentages and Measures of Future Time Perspective ...................... Correlation Coefficients Between Future Time Extension, Individuation and Attachment Percentages and Ego Processes ........ vi Page 38 4O 66 7O 74 76 79 82 85 LIST OF FIGURES Figure Page 1. Patterns of Mean Scores on Defense and Coping Measures for Adolescents With and Without Cystic Fibrosis ........................... 64 2. Patterns of Mean Scores on Attachment and Individuation Percentages For Adolescents With and Without Cystic Fibrosis .............................................. 71 vii CHAPTER I INTRODUCTION Adolescence is typically considered a period of transition from childhood to adulthood. The world of the adolescent becomes fundamen- tally different from the world of the child. Encouraged by advances in cognitive development, able to reason and think abstractly, to com- prehend the meaning of such words as infinity, and to think in propo- sitional terms, "if..then" (Inhelder and Piaget, 1958), the adolescent begins to imagine new persons and scenarios beyond his own family and immediate experiences, to conceive, anticipate and plan for a hypothe- tical, as yet unknown future, and to connect the realities of his pre- sent experiences with these wishes, hopes and future possibilities. Drawn to this new world of possibilities, attachments and allegiances begin to shift from parents and siblings to persons outside the family. No longer able to define himself solely in relation to his immediate, concrete world, his growing identity must now embrace not only the past and present, but a sense of himself in the future. Together, this emergent sense of identity, along with the capacity to conceive of a hypothetical world, lead to a beginning perception of his entire life span and an effort to bridge the past, present and future (Cottle, 1974). Thus, the consolidation of a stable and continuous identity, the enlarging scope of time and world through the anticipation of future events and persons, and the move towards separation and indi- viduation, are intimately linked during adolescence. For the adolescent with a life-threatening illness, the develop- mental tasks of adolescence are much more complex. For this youngster, 1 the ever-present threat of losing his future challenges this beginning sense of self-continuity; indeed, his entire identity may be threatened since this identity is linked with who-he-will-be in the near future (Kastenbaum, 1976). The move towards separation and the enlarging scope of the future and time are shaded by the threat of premature death. While all illnesses impose both physical and psychological demands on the developing adolescent, the demands of cystic fibrosis are uniquely severe. An inherited chronic disorder with an ultimately fatal outcome, because of abnormally viscid secretions of exocrine glands, serious respiratory and digestive symptoms are recurrent and progressively more life-endangering. Treatment involves daily medi- cation, careful attention to diet, postural drainage procedures, and in some instances, repeated hospitalizations. In addition to the extraordinary medical regimen - which usually entails daily help from parents or caretakers - a child with cystic fibrosis lives with the knowledge of a dramatically shortened life span. The continual dependence on others for daily care, even through adolescence, and the knowledge of an abbreviated future, must influence the way the developmental task of separation is managed, and the way the future is perceived and organized. This study investigated this claim. It sought to discover how the developmental presses of adolescence and the disease of cystic fibrosis were reconciled by a group of adoles- cents with cystic fibrosis. In addition to providing a descriptive look at how the adolescents shaped their futures, it also attempted to look at the adaptive solutions used by these youngsters in tra- versing their adolescence. The importance of this area of research 3 comes from the continually increasing life span of children with cystic fibrosis, as well as the prolonged life expectancy associated with many types of life-threatening pediatric diseases (Kellerman et al., 1980). While cystic fibrosis used to be a disease fatal in infancy or early childhood, with antibiotics and an increasing understanding of its pathophysiology, persons with cystic fibrosis on the average now live into their middle adolescence, many living well into their adult years. It was hoped that this research would be helpful to professionals work- ing with adolescents who have cystic fibrosis; it was also hoped that this study would contribute to the more general area of pediatric ill- ness and the impact of disease on the adolescent individual. CHAPTER II REVIEW OF THE LITERATURE Attachment and Individuation Adolescence Although adolescence is viewed as a sanctioned intermediary period between childhood and adulthood, it has previously been studied primarily within the context of dysfunctional behavior. In the early psychoanalytic literature, theorists noted that adolescent behavior often resembled psychopathological states, and the period of adoles- cence was viewed as a stage of developmental disturbance (Freud, 1958). Writing within this theoretical perspective, Blos (1962) described adolescence as the second stage of individuation (the first stage occurring at about eighteen months of age), precipitated by a resur- gence of infantile instinctual drives. With the growth of both ego and developmental psychology, both of which emphasized mastery and competence, there was increasing interest in the behavior of adolescence as it reflected normative developmental tasks. Theory began to reflect this new perspective. Erikson (1963) viewed the consolidation of ego identity as the primary task of adolescence. The consolidation of an identity is accompanied by the issue of separating from one's family of origin. Other theo- rists describe achieving mastery over one's impulses and the develop- ment of love relationships as two more important tasks of adolescence (Lewis, 1973; Silber at al., 1961). In the area of cognition, the development of formal operational thought is an important contributor to an adolescentksgrowing autonomy 5 by allowing him alternatives and hypothetical others. The adolescent begins to reason abstractly from hypotheses independent of concrete reality, and is able to imagine persons and scenarios that are not tied to the immediate reality of his already-defined spheres of persons and activities. Thus, cognitive development in adolescence, which provides the ability to conceive, anticipate and plan for a hypotheti- cal future, is intimately tied to issues of autonomy and separation. Separation as a Gradual Process of Childhood Though the task of establishing oneself as an autonomous and separate person is typically thought of as one of the primary develop- mental tasks of adolescence, one can see how the task of separation is a gradual and evolutionary one, manifesting itself in physical, social and psychological ways at each stage of growth through increasing dif- ferentiation and individuation. And one cannot adequately study the concept of separation with- out also studying its close counterpart, attachment. The ability to separate and the form it takes is clearly dependent on this antecedent variable. Bowlby (1973) was one of the early, major contributors to this area of study. He set forth three developmental propositions which he considered important to the understanding of attachment. The first states that when an individual is confident that an attachment figure will be available when needed he is less prone to intense and chronic fear. Secondly, confidence in the responsiveness and accessi- bility of these attachment figures is gradually built up over time, beginning with infancy, and remains with little change throughout the rest of one's life. And thirdly, these expectations are a result of actual early experience. 6 Other theorists stress the importance of early attachment beha- vior in subsequent personality development. Benedek (1956) maintains that confidence in early attachment figures is an important prerequi- site to self-regulation during periods of life when no direct support is available and one must rely on one's own inner support. Mahler (1967), along with Erikson, believes that trust is established in infancy and early childhood through consistent and reliable mother- ing. Implicit is the notion that a capacity for self-reliance and independence grows out of an earlier, safe dependency on others. According to Erikson (1968), the infant's first “social achievement" is his ability to let mother out of sight without excessive panic or rage, this the underpinning of an inner consistency and object con- stancy, “the recognition that there is an inner population of remem- bered and anticipated sensations and images which are firmly corre- lated with the outer population of familiar and predictable things and people." (Erikson, 1968) During the stages of rapid muscular maturation and initial ambula- tory excursions, the child learns to both hold and to let go, to explore and manipulate the things around him. Through a slow process of enculturation, the child learns to observe, imitate and finally to internalize tools and behavior which further a sense of independence and mastery over the environment. The child begins to invest himself in relationships outside the immediate family. While attachment and separation are processes that begin at birth, they become characteristically different during adolescence where primary attachments and allegiances begin to shift from parents and 7 siblings to persons outside the family group. Adolescent separation implies a previous history of early attachment and gradual differen- tiation, and, within Erikson's schema, reflects the consolidation of the ego. The variables of separation and attachment, then, are inextri- cably connected. In his term, "autonomy-relatedness," which describes the capacity for both independent behavior and the maintenance of parental ties, Bowlby (1973) emphasizes this connection: "Based on early separation experiences and availability and responsivity of attachment figures, the individual develops a working model of object relations which concerns his need for relatedness and separateness." Similarly, Schaffer (1968) says that "the optimum toward general per- sonality development appears to be a balance (within wide limits) between identification and continuing object relations." The above theorists suggest that a balance between the drive for attachment and the drive towards individuation leads to the healthy development of the adolescent. Attachment and Individuation: Empirical Studies Research in the area of adolescent development suggests that separating from one's family of origin and social competence in the extrafamilial environment during adolescence requires substantial, continuing involvement with family members, particularly parents. Douvan and Adelson (1966) maintain there is a curvilinear relation- ship between the development of autonomy and the extent of parental involvement. Studying the "departure" of the adolescent from the family in large samples of adolescents, they concluded that autonomy is best developed at a moderate level of parental involvement, whereas 8 too little or too much involvement disturbs the development of auto- nomy. Other than objective questionnaires developed during the 30's and 40's, there was little research done on the issue of separation as a normative, developmental task until the 1960's when a group of researchers from the National Institute of Mental Health (Murphey et al., 1963), deriving their theoretical base from Bowlby's work, began investigating how adolescents managed the transition from high school to cpllege. Adolescents were grouped according to their relative position on two dimensions, autonomy and relatedness. Autonomy was defined as the ability to make responsible and separate choices, and by reported feel- ings of being a separate person rather than an extension of others. Relatedness was defined as a positive relationship with parents based on mutual interest, communication and emotional closeness. The choice of these two factors reflects the researcher's theoretical indebted- ness to Bowlby‘s concept of autonomy-relatedness. It was found that while parents of the high autonomy and high relatedness group encouraged autonomous behavior, they allowed a greater range of experimentation (within a set of family guidelines), they also exhibited a congruence between their beliefs and actions, and were avail- able as models of autonomous persons with whom the students could readily identify. Those students low on both autonomy and relatedness had dif- ficulty rejecting outside influences in making choices, came home less often than the first group, and kept an emotional distance through detach- ment or negativism. Their parents exhibited greater discrepancies between values and behavior and had a more difficult time accepting the 9 students as young adults rather than dependent children; importantly, they expressed a lack of confidence in their children's abilities to succeed away from home. Parents of students who were highly autono- mous but only moderately related were similar to the high autonomy and high relatedness group with one exception. Parents assigned their chil- dren more restricted and less flexible roles and when the children broke away in an attempt at autonomous action, conflicts ensued. These stu- dents often reported feeling more "at home" in college than with their families. This study is important in that it supports the theoretical litera- ture which suggests that a balance between autonomy and relatedness leads to the greatest psychosocial competence in adolescence. A number of other studies have explored the broad relationships between parents and children and indices of social adjustment outside the family. In general, these studies suggest that psychosocial compe- tence is best developed in families where parents, in supportive and cooperative marital relationships, express warmth and interest in their child's activities and encourage active participation within the family in making family decisions. At the same time, these parents express support for their independent, autonomous behavior and involvement with peers outside the family. These findings support the empirical notion of a balance between autonomy and relatedness (Douvan and Adelson, 1966; Bowlby, 1973; Murphey et al., 1963; Offer and Offer, 1975). Autonomy and the Concept of Time While the previous sections have explored the issues of attachment and separation, another important aspect of adolescence which is inti- mately connected with issues of separation and.autonomy, and salient to 10 the study of adolescents with cystic fibrosis, is the notion of the time concept. The consolidation of a stable and continuous identity is linked to the acquisition of a stable and continuous notion of time: "The young person, in order to experience wholeness and self-continu- ity, must feel a progressive continuity between that which he has come to be during the long years of childhood and that which he promises to become in the anticipated future (Cottle and Klineberg, 1974)." There is no evidence to suggest that the development of temporal experience parallels the evolution of the self or ego (Rabin, 1978). Because the task of individuation and separation is connected with the enlarging scope of time through the anticipation of future events and persons, the structuring of time and the characteristics and mode of separation might be expected to be related. The development of the time concept (and more specifically, future time perspective) and its relationship to the general development of the child will be explored in the following section. Future Time Perspective Developmental View of Future Time Perspective: A Theoretical Explora- jjgyl The connections between developmental stages of personality and the concomitant unfolding of temporal experience have been explored by others (Wallace and Rabin, 1960). The concept of time is a process that begins in a primitive, rudimentary way in infancy through the alternating experiences of frustration and satisfaction around feed- ing, and continues to develop through the play activities of the pre- schooler. Experience in the larger world (outside the family) and the acquisition of symbolic thought through language and speech, give 11 increasing breadth to the future. But, according to Piaget, who labeled stages of development according to their corresponding cogni- tive levels, the pre-schooler or pre-operational child is, as yet, only able to deal with reality as it is seen (1952). In the follow- ing stage of concrete thinking (at about eleven or twelve), the child is able to draw inferences from the actual to the potential. As his understanding of the logic of classes and relations emerge, he is able to organize his experience into an integrated set of cognitive opera- tions which give consistency to the world. He is not, however, able to apply the same logic to verbal propositions which are devoid of con- crete content. And a pre-adolescent or concrete stage child's cogni- tive capacities do not yet let him comprehend the psychologically dis- tant, abstract or hypothetical: "A child is unlikely as yet to inte- grate distant anticipations of his adult years into an overarching sense of identity or an awareness of his life as a whole" (Lewin, 1935). A preadolescent might not yet distinguish between realistic expectations and unrealizable wish-fulfilling fantasies: "The ideal goals and real goals for the future are not much distinguished and this future has the fluid character of the level of unreality." (Lewin, 1935) Thus, while the preschool child is concerned with the present, the preadolescent inhabits the present and the relatively near future. A child's projected adult years, however, remain unconnected with his present, although they are available for the projection of wish- fulfilling fantasies and often offer a possibility of escape from the frustrations of the present. wallace and Rabin (1960), in their review of the published research concerned with temporal experience, 12 report that "the time concept, with ever-widening past and future references, continues to develop through the thirteenth or fourteenth year when the adult concept [of time? first emerges. At that time, the notion of continuity of time and its relatively accurate estima- tion are reached." With the acquisition of formal operations, the adolescent now conceives of the years of adulthood with a far greater sense of reality than when the real future was limited to concrete extensions of the present situation or to events already experienced (Cottle and Klineberg, 1974). The adolescent is now able to conceive of time in abstract terms and the future is open to reasonable expecta- tion and planning. "While the child deals largely with the present, with the here and now, the adolescent extends his conceptual range to the hypothetical, the future and the spatially remote." (Flavell, 1963) With these new conceptual abilities, he is more likely to sense the connections between his present and future, and the span of temporal integration may extend dramatically farther into the distant future (Cattle and Klineberg, 1974). Says Inhelder and Piaget (1958): The connection indicated by the words, "if..then" (inferential implication) links a required logical consequence to an asser- tion whose truth is merely a possibility. This synthesis of deductive necessity and possibility characterizes the use of possibility in formal thought as opposed to possibility-as- an-extension-of-the-actual-situation in concrete thought and to unregulated possibilities in imaginative fictions. Time is now viewed as an abstract continuum encompassing all moments in an irreversible succession. In summary, there is a broad theoretical base for believing that adolescence brings a significant change in the way an adolescent envi- sions his future: "Images of future experiences are now more securely linked with the present. Where wish-fulfilling fantasies once reigned 13 supreme reality now intervenes." (Cattle and Klineberg, 1974) This notion is supported in the empirical literature. Empirical Studies on the Time Concept The available data are generally consistent with the notion that the distant future assumes a new reality in adolescence. Research demon- strates that notions of the future and how they are integrated into the present correspond to particular developmental stages, with different findings for children and adolescents. Farnham-Diggory (1966) asked children, age seven to sixteen, to indicate on a 197 millimeter line how far away various future times seemed to be. The subjective time periods ranged between three hours and eighty years from the present. She found that distances marked on the line were significantly related to the age of the child; the younger the child, the farther away the future seemed. Davids and Parenti (1958) collected story-completions from boys age seven to thirteen. They found that the more well-adjusted boys (as evidenced by stories rated by psychologists for optimism, stabi- lity of friendship and personal happiness) told stories in which the action took place in the present. Klineberg (1967) conducted a study which demonstrated results similar to those of Davids and Parenti. He tested two groups of French boys, age ten to twelve. One group consisted of boys enrolled in spe- cial schools for maladjusted children, the other group was comprised of 23 boys of the same age and grade levels attending a private subur- ban Paris school. There were four measures of the child's orientation toward the future: 1) Each boy told stories based on two TAT cards and indicated the amount of time that passed between the beginning and 14 end of the action they described; 2) they were asked to recount ten dif- ferent things they had thought or spoken about during the preceding week, questioned about what they thought or spoke about these events and each event given a temporal placement (past, present, and future); 3) they were then asked to list as many different things they thought might happen to them during the rest of their lives and to indicate how old they thought they would be when these events occurred; 4) finally, they were given fourteen life experiences and asked to guess when each of these events might occur. There were no significant differences between groups in the number of anticipated future events nor in how far they projected them- selves into the future. However, when asked to guess at what point the fourteen given events would occur, the more maladjusted adolescents made median estimates extending significantly farther into the future, and their TAT stories encompassed longer spans of time than the stories of normal boys. Specifically, the maladjusted boys more often told stories with optimistic endings, whereas the normal children more often merely described the situation present on the card with no discernible outcome. Says Klineberg: "Unlike their more maladjusted peers, these children seemed perfectly willing to leave all the action in the pre- sent." Klineberg (1967) then interviewed two groups of French adolescents, age thirteen to sixteen. One group consisted of adolescents attending a private school for boys with serious academic difficulties, the other group attended a regular school. They were given the same tasks as the preadolescent boys from the first study. In comparison with the normal young men of the same age, the maladjusted adolescents listed 15 significantly fewer and less distant future events. Moreover, in response to both TAT cards, the maladjusted boys told stories that encompassed a significantly shorter period of time. Comparing the results from the two studies, the stories told by normal adolescents were strikingly reminiscent of those told by the maladjusted children. That is, normal adolescents and maladjusted children both told stories with optimistic endings and long prospec- tive time spans. In contrast, the maladjusted adolescents generally told pessimistic stories within a relatively narrow time frame; like normal children, they were less oriented towards distant future events. These studies suggest that for unhappy or maladjusted children, the future is available for projecting wish-fulfilling (optimistic) fantasies. But because the future has assumed a tangible reality dur- ing adolescence, it is less available as a means for fantasied escape, its unpleasant realities to be avoided, the unhappy adolescent confined to the present (Cattle and Klineberg, 1974). These results confirm the theoretical notions presented earlier: there is a greater future orientation among the more maladjusted preadolescent children, but by middle adolescence, the more unhappy and maladjusted the adoles- cent, the less oriented he is likely to be towards the distant future. However, in a study of time perspective in normal adolescents, Kastenbaum (1976) found that while most of the adolescents did direct their thoughts to the future, almost everything important in life was "just up the road a piece." The second half of their life span was described as almost empty, with little thought regarding the fourth of fifth decades or beyond. While the future was perceived and 16 experienced as immediate, the past seemed to be "blanked out." Kasten- baum observed that these adolescents felt uneasy about being asked to think about where they had been, moving hurridly from "now" to "next" with little knowlege of what was to follow "next." While this study does not contradict the previous data, it might amend it: while nor- mal adolescents may be future-oriented, Kastenbaum suggests this future does not extend very far in time. There is also evidence to suggest that within the same age groups, there are major differences in time perSpective, not only in how much individuals think of the future, but how much future they consider them- selves to have. In a study by Sabatini and Kastenbaum (1973), a group of college students were asked to compose their own death certificates. There were marked differences among the group studied with regard to the amount of time perceived to be remaining in their lives. The authors concluded: "Just knowing that a person was of the current college generation would not enable us to predict reliably that he or she envisioned death to be many decades away." Thus, while the acquisition of the concept of temporality, and specifically, future time perspective, is related to developmental stages, there are also other factors which influence the development and experiencing of future time perspective. Some of these other factors will be explored in the following sections. Other Factors Affectinnguture Time Perspective Wohlford (1966) asked college studentsto describe in detail an unpleasant experience they thought would probably happen to them in the future. Subsequently, when asked to list twenty topics they had recently thought or spoken about (compared with twenty other events 17 listed before they were forced to envision an unpleasant future), they mentioned significantly fewer future and more past events. Wohlford concluded that when an individual confronts the possibility of some- thing unpleasant, he tends to stop thinking about the future, turning instead to the present or the past where events are less threatening if only because they have already occurred. Eson and Greenfield (1962) asked males and females, age 10 to 65, to list the things they had recently thought about and to indicate their feelings about them. Those items referring to future events were particularly likely to be rated as pleasant. The authors concluded: "We rarely expect the worst from the future, and when we do, we tend to think about other things." Osgood (1962) suggests our time span contracts to the present moment when we are emotionally driven or absorbed. Cattle and Kline- berg (1974) suggest there is a curvilinear relationship between anxiety and temporal orientation. The onset of anxiety itself pre- supposes the anticipation of the future. Research suggests that moderate anxiety may facilitate the expansion of the dimensions of integrated time as a person searches for ways to control the future he envisions, while excessive anxiety may contribute to the dissolu- tion of temporal integration and expansion (Cattle and Klineberg, 1974). Experimental studies suggest that psychopathological states influence temporal experience. Dilling and Rabin (1967) found that schi20phrenics exhibited less coherence in the way they structured their future and depressives exhibited a more constricted sense of time (both past and present) than either schizophrenics or normals. 18 Depressives also tended to overestimate time: “Every hour seems like a year to me." Research suggests that an undesirable future will be acknowledged if a person believes there is something he may do to change it. If this unpleasant future seems unavoidable, a person may maintain a rela- tively restricted time orientation which then operates as a defensive strategy. offering protection from the anticipation of an unpleasant future: Images of that unhappy future may then be actively excluded from consciousness and relegated to a realm of punasubjectivity, safely unconnected with current realities. Under these circum- stances, the span of future time that will be integrated with conceptions of the past and the present may be limited to those relatively short range events that a person feels she or he can control. (Cattle and Klineberg, 1974, p. 23) Thus, attending only to the present can serve as a defense against unavoidable pain. Future Time Perspective, Individuation and Death One unavoidable reality in every individual's future is death. "Thoughts of time and death have a natural affinity for each other. What is left of our lives is in the future, and death also resides in the future." (Kastenbaum, 1976) Using a group of college students, Dickstein and Blatt (1966) studied the relationship between two measures of future time per- spective and the preoccupation with death. The questions about death were straightforward: "I think about my-own death more than once a week, once a week, once a month, once a year." Futurity measures included story completions from given story roots and the Picture Arrangement subtest from the WAIS which is often used as a measure of the capacity to anticipate and organize future events. They found 19 that those who exhibited a high manifest concern about death had more restricted projections into the future; those with low manifest death concern showed significantly greater future extension. Since this was a correlational study, it does not give any indication about directionality, that is, it doesn't determine whether concern about death affects futurity or whether futurity affects concerns about death. Kastenbaum (1976) suggests that as the adolescent moves towards individuation, he or she will experience a greater concern about death. Hypothesizing that a heightened awareness of oneself as an individual heighten's one's concern about death, he says the follow- ing: ...what does it mean to experience oneself as an individual, especially when the experience is of recent vintage? It means to experience oneself as alone. To be an individual and to be alone is also to be in a new kind of relation to death...the acute perception of individuality-aloneness seems to invite a sharpened sense of mortality. Although he has achieved a higher level of integration than he possessed as a child, the adolescent or young adult has not eluded the relationship between self-constancy and the prospect of death. (p. 410) Thus, as described earlier, the move towards individuation in adolescence is intimately connected with the notion of time, and the notion of time,more specifically, future time perspective, is linked to death. These interrelationships are present for all adolescents, but for adolescents with cystic fibrosis, these concerns present themselves earlier and more bluntly. The next section will focus on the specific concerns of adoles- cents with cystic fibrosis. 20 Cystic Fibrosis An Introduction Cystic fibrosis is unique in that it is both a chronic and fatal disease. This contrasts with other diseases of childhood, juvenile diabetes, for example, which is chronic but usually not fatal, or leukemia, which has a fatal outcome after a shorter course. Because no known defect accounts for all the pathophysiologic manifestations in cystic fibrosis, strictly speaking, cystic fibrosis must as yet be considered a syndrome rather than a disease (Wood et al., 1976). Cystic fibrosis is considered an inborn error of metabolism genetidally transmitted as an autosomal recessive trait. It is the most frequent lethal genetic syndrome in Caucasian children, occurring in approximately one in every one thousand two hundred live births. Five percent of most white populations are calculated to be carriersof the cystic fibrosis gene. Cystic fibrosis is characterized by abnor- mally viscid secretions of the exocrine glands and manifested to vari- ous degrees in the lungs, GI tract, sweat glands and sexual organs and resulting in obstructions of organ passages. While cystic fibrosis is often manifested and diagnosed at birth by a positive sweat chlo- ride test, in rare instances, diagnosis is not made until adolescence. Cystic fibrosis produces infertility in most~males, but other than a delay in the onset of menarche (Wood et al., 1976), it does not affect the female reproductive system. At present, cystic fibrosis has no cure, with symptoms becoming progressively more severe and often neces- sitating repeated hospitalizations. Although there are varying degrees of severity and various ways the disease is manifested, chronic obstructive lung disease and infections secondary to these obstructions 21 are typically responsible for the eventual outcome of the disease. Treatments, which are daily, time-consuming and offer only symptomatic relief, involve antibiotics, multivitamins, postural drainage and per- cussion, and a controlled diet. When cystic fibrosis was initially recognized as a discrete disease entity or syndrome in 1938, 85 percent of all infants diagnosed with cystic fiborsis died by the age of two (Shwachman et al., 1965). In their 1955 chapter on Mucoviscidosis in the Advances of Pediatrics, Shwachman and Leubner point out that "only a rare patient survives to age ten." In a study in Great Britain in 1974, 72 percent of children with cystic fibrosis were found to live until age 12, and 45 percent lived to the age of 20 (Mearns, 1974). Presently, the life span for individuals with cystic fibrosis increases on the average of one year each year (GAP Conference, 1980). Thus, although cystic fibrosis used to be a disease fatal in infancy or early childhood, individuals with cystic fibrosis now live, on the average, into their middle adolescence, with many living well into their adult years. Lefebvre (1973) des- cribes the difficulties in cystic fibrosis: "As long as a precise etiology and prevention of cystic fibrosis eludes us, the treatment of this illness remains chiefly palliative and based upon meticulous pulmonary hygiene which requires tremendous expenditures of time and energy pursued over an indeterminate period that may seem endless." A Developmental Perspective of Cystic Fibrosis From Infancy to Ado- lescence Just as an earlier section explored the issues of autonomy and separation and the consolidation of a time perspective from a norma- tive, developmental perspective, it would be useful at this point to —-- '2? ' present a developmental view of the child with cystic fibrosis. Highlighting the most significant aspects of development as they might later relate to adolescence, this cannot be a complete develop- mental review since part of the task of this study is to gain a greater understanding of the developmental course of a child with cystic fibrosis through his adolescence. Because of its varied presentation, cystic fibrosis is a disease that does not always receive early diagnosis. In infancy, cystic fibrosis can be confused with other disorders and go unrecognized for long periods of time. During the early stages of development, cystic fibrosis can dramatically affect the early attachment of mother and infant through problems around the feeding process. Eighty-four per- cent of undiagnosed infants were characterized as vocarious feeders who nonetheless failed to thrive during the first three months of life (McCollum and Gibson, 1970). The unsatisfied infants were fussy and difficult to comfort. In addition to difficulties around feeding, foul smelling stools, an intrusive and constant cough and the rigors of daily management can complicate the attachment process. Farkas (1973) studied the severity of a child's illness and its effect on his psychological functioning and the functioning of other family members. She found that mothers of children with mild presen- tations of cystic fibrosis (as defined in the study) reported more feeding problems and insecurity about their child's failure to grow than those whose children were in the terminal stages. In the mild cystic fibrosis group, the mean age at diagnosis was 37.2 months compared with the terminal group where mean age at diagnosis was 26.6 months. Farkas suggests that the longer period where symptoms 23 remained undiagnosed may have allowed more time for the mother to ’develop feelings of insecurity about the growth of her infant. With the school age child, separation from the family acquires a new, visible reality as the child leaves home daily to go to school. Physical differences between children with cystic fibrosis and normal children can cause social estrangement, and the accompanying physical symptoms of cystic fibrosis may place the child in socially embarras- sing situations. McCollum and Gibson (1970), in studying 65 families with a child with cystic fibrosis, found that 44 percent of the chil- dren studied had school adjustment problems (day dreaming, inatten- tiveness, restlessness, disruptive classroom behavior). Forty-seven percent of parents in this study indicated they permitted their chil- dren less independence than if their child were healthy. While the impact of cystic fibrosis on the entire family is not the focus of this study, there are research findings in this area that are pertinent to the area of individuation and separation in adoles- cence. Most studies of the family with a child. with cystic fibrosis have indicated considerable marital discord (Lawler et al., 1966: Turk, 1964). Lawler found intrapsychic and interpersonal conflicts among the parents of all the cases he studied. Mothers were described as clinically depressed, often showing hostility toward the child with cystic fibrosis, and fathers were typically described as physically and emotionally absent. Marital problems were suggested by the find- ing that six of the eleven couples studied had considered separation and three couples had no sexual relationship.- Since this study was without experimental control, however, these findings can only be suggestive. 24 Literature relating to other problems of childhood would suggest that the presence of major interpersonal conflicts between the parents will clearly have an effect on the normal developmental course of the child (Satir, 1967). The school phobic child, for instance, is often afraid to attend school because of the wavering foundation, home, he is leaving behind. (Weiner, 1970) Research on families which suggest that the child with cystic fibrosis often develops an especially close relationship with his mother, with father being more remote (Lefebvre, 1973; Tropaner et al., 1970; Lawler et al., 1966), might indicate that difficulties of separation will be exacerbated by this family "skew." (Lidz, 1973) In Lefebvre's (1973) study on adolescents with cystic fibrosis, a large proportion of patients described themselves as being very depen- dent upon their families. Only three patients lived alone, while the majority were still living with their parents. Two thirds of all the patients felt ambivalent about their strong dependency needs but were anxious at the thought of living alone. While these adolescents and young adults described their parents (and more specifically, mothers) as overprotective, overanxious and guilt-ridden, a majority described themselves as very dependent upon their parents. Lefebvre eloquently summarizes the position of the adolescent and young adult with cystic fibrosis: The teenager and young adult with cystic fibrosis experiences severe difficulties in separating from an often overprotective and occasionally rejecting family upon whom he feels unusually dependent because of time-consuming, expensive treatments. Often anxious and depressed, he has doubts about his identity and worth as a student, worker, friend and sexual mate, and is hesistant to engage himself in an intimate relationship with a member of the opposite sex. His understanding of cystic fibrosis is frequently incomplete, especially in terms of the genetic implications of his illness, while he is planning, in most cases 25 to have his own children. Riddled with doubts about himself and fears of the future, he is unable to find anyone to com- pletely confide in and is left alone with his anxieties (p. 36). The Impact of Cystic Fibrosis on the Psychological Functioning of the 9m. While there are descriptive studies which discuss cystic fibrosis and its psychological implications for adolescence(Teicher, 1968; erossman, 1975; Palmer, 1977; Lefebvre, 1973), and while there are research studies that include adolescents as part of their sample group (Lawler et al., 1966; Meyerowitz and Kaplan, 1967; Tropauer et al., 1970; Farkas, 1973; Gayton et al., 1977), until recently, there have been relatively few research studies examining the impact of cystic fibrosis on the adolescent or young adult with his or her particular developmental concerns. Many studies examined the broader perspective of the impact of cystic fibrosis on the psychological functioning of the child, often including adolescents as part of their samples. Data is equivocal with regards to the effects of cystic fibrosis on the psychological functioning and development of the child. Results from some studies suggest that as a group, children with cystic fibrosis experience considerable psychological disturbance. Lawler et al. (1966), in an uncontrolled study, administered psychological test batteries to 11 children with cystic fibrosis whose ages ranged from five to 19 years of age. Pre-schoolers were administered the Stanford Binet and CAT, school-age children were administered the WISC, Rorschach and Schnoell Reading Test, and the two adolescents, ages 17 and 19, were given the WAIS and the Rorschach. 26 From these tests and from psychiatric interviews, results suggested that children across ages with cystic fibrosis had marked anxiety, depressive trends and a preoccupation with death. Tropauer et al. (1970) found that while all children expressed a preoccupation with death and disability, this was especially true of adolescents. In this descriptive study where 20 children with cystic fibrosis age five through 20 were studied along with their mothers, results showed that the concerns and anxieties expressed by the chil- dren were in part a reflection of their specific developmental stage. Again, no comparison group was used. Tropauer found that the young child frequently complained about interruptions of play, his limited diet, and being unable to keep up with others in sports and games. A few expressed concerns as to how they would get treatments when they grew up and moved away from home. The adolescents were more preoccupied with disability and death. They worried about the way their social life was restricted and were con- cerned about being different from their peers. Some were particularly concerned about their smaller stature. Tropauer concluded that the younger child, with limitations in his abstract thinking, is more concerned with separation from his parents on whom he is totally dependent, and less concerned with death, which is a more central concern for the adolescent. In exploring occupational plans, the choices of professions seemed to reflect the process of identification, where passive, pain- ful experiences are converted into active roles in an attempt to relieve anxiety. Future ambitions included "helping people" in pro- fessions such as clinical medicine, medical research, nursing, or, 27 in one case, life-saving. One little girl responded to a question about future ambitions by saying she hoped "to become a teenager." On an abbreviated House-Tree-Person technique, the children's drawings reflected anxiety, insecurity and feelings of inadequacy as evidenced by the distorted body images in over 70% of the drawings. Spock and Stedman (1966) gave 21 children a battery of psycho- logical tests including the Peabody Picture Vocabulary Test, the Goodenough Draw-A-Person Test, and selected Bender Gestalt cards. As in the Tropauer study, the projective drawings showed feelings of inadequacy, high anxiety and need for strength. Some studies contradict the findings reported above which suggest that children of all ages with cystic fibrosis exhibit considerable intrapsychic conflict. Gayton et al. (1977) did not find an increase in emotional disturbance in children with cystic fibrosis. He studied 23 children age five to 18. These children were tested with the Piers- Harris Self-Concept Scale, the Missouri Children's Pictures Series and the Holtzman Inkblot Test. (Older children in the study were admini- stered the Tennessee Self-Concept Scale because it is a more appro- priate measure of self-perception in the adolescent). The total self-concept score for patients with cystic fibrosis was higher than Pier's data for normal children (1969) which indicated a perceived state of well-being. The self-concept scales are measures of self-perception and therefore more subject to persons responding in socially desirable ways. Since studies of children with serious illnesses would suggest that denial is a primary defense mechanism (Mattsson, 1972), high self-concept scores may reflect a defensive strategy of denial rather than an accurate reflection of well-being. 28 Another study by Tavormina (1976) investigated the psychological functioning of groups of children with diabetes, asthma, cystic fibro— sis and hearing impairment on a battery of standardized personality instruments in order to test the hypothesis that chronically ill chil- dren are especially vulnerable to psychopathology, Tavormina found that with few exceptions (for instance, children with cystic fibrosis were more dependent, less mature and voiced more problems with intel- lectual and school status and their physical appearance), results on the tests demonstrated the normalcy of these children. (Tavormina also included the Piers-Harris Self-Concept Scale in this study, along with the Nowicki-Strickland Locus of Control Scale for Children). In contrast to the above studies, Farkas (1973) divided her sam- ple of cystic fibrosis subjects into two groups, fatal versus non- fatal prognosis, or good versus poor current physical functioning. The designation of severity of illness was made by the patient's physician. She was interested in finding out whether it was neces- sary for the child to be obviously physically ill for the individual and family to accept and adapt to the child's illness, or if merely the knowledge of the diagnosis, along with clinic visits and home care of outwardly healthy-looking children were sufficient. Futter- man (1970) had observed earlier that during periods of remission, denial is strong and the return of symptoms is met with unanticipated shock. Contrary to expectations, Farkas found no differences between the groups on measures of anxiety, guilt, depression, future time perspec- tive, adjustment or openness in the families. Two of the older patients who came from families rated as maximally open in discussion 29 of the illness, and who had had numerous hospitalizations and been in contact with other children who had died from cystic fibrosis, both stated that "it was not until they had become very sick, in fact, close to death themselves in their late teens and early twenties that they had fully realized that they would be likely to die of cystic fibrosis at an early age. Both said they might have lived their lives differently had this realization come earlier. But one said he was glad not to have known about the severity of his disease; the other said she had talked from an early age about not living as long as other people, but this was an intellectual knowledge, different from an immediate confrontation with the possibility of dying. (Farkas, 1973) Kulczycki, Robinson and Berg (1969) studied parents of children with cystic fibrosis at the time of diagnosis and found no relation- ship between the quality of the parents' adaptation to the illness and the severity of the child's illness. Comparisons of results across these studies are difficult for a number of reasons. First, each study uses different measures, some studies using abbreviated measures, some more extensive batteries, projective tests, or a combination of objective and projective tests. Secondly, these studies often include broad age ranges of children and young adults and their conclusions attempt to address these vari- ous age groups as a uniform population. Thirdly and importantly, many of these studies do not include experimental controls or com- parison groups, some using anecdotal observations or small samples. 30 The Psychological Effects of Cystic Fibrosis on Adolescents and Young me Some of the descriptive and research studies that have explored the lives of adolescents and young adults with cystic fibrosis seem to suggest profound difficulties. Pinkerton (1969) observed that adolescents saw themselves as different from and inferior to their peers, and resented the dependency necessitated by the management of the disease. Patterson (1969) observed that adolescents worried about being unable to get a job because of their disease and were concerned about not being able to marry and have normal children. In a descriptive study by Lafebvre (1973), 30 patients age 13 and over were interviewed to obtain a picture of global psychosocial functioning. Twenty-three of the 30 patients felt inferior to normal and described themselves as "trouble-makers, social outcasts and "ugly ducklings." One third said they were depressed all the time and one third had periods of despair during which they contemplated sui— cide through stapping treatments (four had stopped treatments for some period of time). All patients demonstrated a high level of anxiety, particularly when discussing their future. While it was difficult to assess defense mechanisms within the interview situation, Lafebvre felt that most patients alternated between a protective use of denial, rational- ization and reaction formation, and a reactive depression. Six seemed to exhibit a more sustained use of denial of their diagnosis (these patients mirroring their parents' attitudes) and this seemed to be reflected in the high proportion of patients who had an incomplete knowledge of cystic fibrosis. 31 While grades were represented by a normal distribution, most patients felt they weren't doing well, and this dissatisfaction seemed more related to general feelings of inadequacy. A few older patients commented on their feeling that they were "running out of time" which made it difficult to participate in school. One patient commented that any future she might build for herself would be a "quick-sand castle" which could crumble suddenly. Some students who had quit college study felt they should travel when they could. With what was described as a constant feeling of impending catastrophe, many felt that study was not important. Boyle et al. (1974) studied 27 patients age 13 to 30 by psychological testing (intellectual tests and full projectives) and psychiatric interview data reviewed by two psychiatrists. These patients were evaluated on performances at work and school, for the quality of their interpersonal relationships, interactions with family members, and styles of caping with illness. While these patients were competent in their daily routine, and with the majority doing well in school, Boyle found areas that were very problematic. In interviews, all the patients expressed dissatis- faction with their bodies, and on the Draw-A-Person, drawings were often juvenile, with 17 patients showing striking denial of sexual differentiation, male and female characters often being indistinguish- able. For some patients who did not deny their sexuality, their - pictures were exaggerated in proportion with very little correspon- dence to their own body. The majority of patients felt isolated, half felt they had no close friends, and many felt they had been rejected by people when they tried to begin friendships, withdrawing into their relationship 32 to their mother. Seven of the 27 were married, however only one marriage was characterized as stable. One patient was getting a divorce and three patients said they often considered divorce. Boyle noticed a difference in how the adolescents and young adults managed their future. The adolescents appeared very anxious when asked to talk about the disease. One third claimed to know only the name, cystic fibrosis, although they said it had been explained to them by physicians. However, projective testing indicated they knew a lot about their disease but tried to avoid talking about it: "You can't do anything about it and it isn't going to change my way of living." Boyle found that adolescents in their last years of high school often felt, "what's the use with regard to making decisions about the future." Young adults either avoided looking at the future or were preoccupied with the past. In contrast to the adolescents, they appeared less overtly anxious when cystic fibrosis was mentioned. As in the studies examined earlier (Tropauer et al., 1970; Lawler et al., 1966), feelings about death were a major preoccupation of both adolescents and young adults, with patients using denial and avoidance as primary defense mechanisms to deal with their concerns. While Landon et al. (1980) did find that males with cystic fibro- sis perceived themselves as unhappy, they postulated a different basis for this unhappiness. They compared males and females with cystic fibrosis (ages 12 through 19) with otherwise healthy, short stature males who may also have had delayed puberty. All three groups were considerably below the mean height and weight percentiles and were delayed in sexual development as measured by Tanner stages. On the Offer Self-Image Questionnaire which measures the ado- lescent's self-perception of his or her personal mastery of the 33 problems of adolescence, both groups of males, males with cystic fibro- sis and short stature males, perceived themselves to be disturbed. The authors concluded: "Woven through studies is concern that the Damoclean sword of fatal illness has been a major impediment to the individual's ability to complete adolescence...It is entirely possible that the CF males are as upset about being short as about having cystic fibrosis!“ Females, they suggest, are more able to disguise maturational delay through clothing. Thus, Landon et al. suggest that adjustment problems in adolescent males with cystic fibrosis may be a consequence of their growth retardation and pubertal delay rather than the "sword" of an early death. Goldberg (1979) studied adolescents with cystic fibrosis who were compared with normal adolescents of the same age and educational standing on measures of vocational development and adjustment. They hypothesized that adolescents with cystic fibrosis would be less mature than healthy children on their educational and vocational plan- ning for a career, and would have less knowledge of occupations and take less initiative in forming a vocational plan. In the lower grades (seven through nine), adolescents with cystic fibrosis scored significantly lower than adolescents without illness on measures of educational plans and realism (defined as the ability to plan while bearing in mind one's limitations as well as environmental constraints). But they scored higher (although with the exception of the seventh grade, not significantly so) on the variables of work values, strength of commitment and degree of aware- ness and occupational requirements. In grades 10 through 12, adoles- cents with cystic fibrosis scored significantly higher on strength of 34 commitment and degree of awareness, and significantly lower on real- ism, educational and vocational plans. Many of the adolescents with cystic fibrosis expressed an inter- est in entering one of the health professions (similar to the finding by Tropauer et al., 1970), and Goldberg attributed their high scores on awareness of occupational information and strong commitment as a reflection of their continuing involvement with the health care system and their close relationships with medical caregivers. For adolescents with cystic fibrosis, work was seen primarily as a way to gain personal satisfaction and secondarily as a way of earning income and supporting a family. A Theory_of Psychological Innoculation The Goldberg study suggests that adolescents with cystic fibrosis do have strengths and might be able to better meet the demands of ado- lescence than implied by the findings of the previously discussed studies. And, there seems to be a growing body of empirical research which proposes that living with chronic illness leads to a process of "psychological innoculation," strengthening the individual's ability to cope with varying life events. Straker and Kuttner (1980) found no difference between adoles- cents with cystic fibrosis (age 12 to 16) and well adolescents on measures of peer and family relationships, anxiety about death and the future, depression and locus of control. Adolescents with cystic fibrosis did score significantly higher on the measure of persecution. Kellerman et al. (1980) found no differences between adolescents across varying groups of illness and well adolescents on measures of state-trait anxiety and self-esteem. Only adolescents with cystic 35 fibrosis and diabetes scored comparably with well adolescents on a measure of locus of control (exhibiting higher internal than external control), even though they were rated by their physicians as having shortened life expectancies. All other illness groups (adolescents with cancer, cardiologic disorders, renal syndromes, rheumatologic disorders) were significantly more externally focused than healthy respondents. The authors suggest that because the patient with dia- betes or cystic fibrosis can exert some control over his illness and symptoms through manipulation of diet and self-administration of medi- cation, he may have a greater sense of internal control. They attri- bute the nonsignificant difference on anxiety measures between all groups to the way the chronically ill child learns to develop coping mechanisms over time, this notion further supported by the finding that anxiety was negatively correlated with time since diagnosis. Zeltzer et al. (1980) compared groups of chronically ill adoles- cents (including a cystic fibrosis group) with normal adolescents on the perceived impact of illness on their life. Interestingly, the so-called "healthy“ control group reported a 30% rate of current ill- ness (although this represented minor physical complaints) and did not significantly differ from the disease group on extent of illness reported, even though the illness groups included adolescents with serious, life-threatening diseases. In fact, with the exception of the rheumatology group, a group composed of persons in chronic pain, there were individuals in every illness group who reported "no illness." Healthy adolescents reported that illness disrupted their popularity and peer activities, whereas ill adolescents reported treatment related disruptions. Both healthy and ill adolescents had positive 36 future outlooks. Those reporting a positive outlook for the future included a number of adolescents who died within two weeks to six months following their participation in the study. Summary As mentioned above, it is difficult to draw a consistent conclu- sion from the reported studies. Often studies reporting serious dis- turbance as a consequence of cystic fibrosis were descriptive or uncontrolled. In general, it can be said that when compared with a normative population, children and adolescents with cystic fibrosis do not fare as poorly as might be suggested from results in studies where they are viewed in isolation. Research on children with cystic fibrosis, in particular, adolescents, has begun to shift from the confirmation of psychological disturbance to the ways in which the adolescent might adapt to his illness over time. This shift to an exploration of long-term individual (and family) adaptation reflects the increasing life span of individuals with cystic fibrosis (and many other serious pediatric illnesses as well). The next section will explore this idea in more detail. Coping and Defense Introduction The importance of studying adaptation to illness derives from the widely recognized notion that emotional responses to the stress of chronic illness on the part of the child and his family may contri- bute to the course and eventual outcome of the illness. It has been 37 suggested that emotional responses to the disability or disease may mediate between the disease and its effects. Furthermore, while much attention has been paid to the reactive and defensive aspects of adaptation to stress, researchers are beginning to investigate the synthetic and coping aspects of adaptation (Mattsson, 1972; Coelho, Hamburg and Adams, 1974). Haan (1977), offering a framework from which to explore these issues, presents a theoretical model of ego functioning that addresses both c0ping and defensive modes. Model of Ego Functioning Haan (1977) views the ego as a combination of processes, "the ceaseless acts of people assimilating new information about themselves and their environments and accomodating to these assimilations by con- structing actions that attain and re-attain an unremitting sense of dynamic equilibrium" (p. 43). The individual's everyday behavior reflects an underlying enterprise of maintaining self-consistency and making sense of himself. The three general modes of coping, defense and fragmentation (fragmentation representing a third mode that this study will not use) represent a pragmatic hierarchy of action through which the individual seeks to maintain this self-consistency: “The person will cape if he can, defend if he must,fragment if he is forced to" (p.42). According to Haan, coping and defensive modes represent variations on a continuum rather than behavioral opposites. They are assumed to share the same generic processes, differing only on a set of specified properties which are described in Table 1. 38 TABLE 1 Properties 0f Ego Processes Coping Processes Defense Processes 1. Appears to involve choice 1. Turns away from choice and is and is therefore flexi- therefore rigid and channeled. ble, purposive behavior. 2. Is pulled toward the 2. Is pushed from the past. future and takes account of the needs of the pre- sent. 3. Oriented to the reality 3. Distorts aspects of present requirements of present requirements. situation. 4. Involves differentiated 4. Involves undifferentiated process thinking that thinking and includes elements integrates conscious and that do not seem part of the pre-conscious elements. situation. 5. Operates with the organism's 5. Operates with assumption that necessity of "metering" the it is possible to magically move experiencing of disturbing disturbed feelings. affects. 6. Allows various forms of 6. Allows gratification by sub- affective satisfaction in terfuge. open, ordered and tempered way. (Haan, 1977, p. 36) 39 Within this model, coping reflects conscious, flexible and purposive behavior, while defenses reflect rigid, channelled distortions of intersubjective reality: "In effect, coping processes continue an open system, defenses produce particular closures of the system." (Haan, 1977, p. 34) Haan has grouped the ten generic processes into cognitive func- tions, reflexive-intraceptive functions, attention-focusing functions, and affective-impulse regulations. As an example of how the generic process finds expression both as a coping process and a defensive process, one can examine the ego process of sensitivity. As a coping process, it is expressed as empathy, as a defense, projection, and in its fragmented mode, as delusional. The taxonomy of the ten ego pro- cesses can be found in Table 2. Empirical Studies on the Ego Model Haan (1974) has used this model empirically to explore patterns of functioning associated with chronic illness and adolescence. She studied a group from the longitudinal sample at the Berkeley Insti- tute of Human Development at adolescence and again at age 37 in order to see what patterns of adolescent coping and defending were associated with adult adjustment. Based on life assessment interviews and Q-sort measures, subjects were divided into "ego groups": 1) copers 2) defenders 3) high ego (strongly coping and defending) and 4) low ego (neither predominantly coping or defending) groups. Haan found that for the caping adults, adolescence had been an opportunity for change and also a time of conflict and disequilibrium. The defenders 4O covmmmsamm cowmmmsaazm copucssow mcowuummm :o_p:ppuma:m ucmsmumpamvo covuosrpnam m:o_pmpsmmsimm_=aewim>wuom$w< —mwcmo sewumgucwocou mcowuuczw mc_m:uowicowacmuu< covmmmsmmm ommicowmmosmmm :owuumwosa Anyone“ assoc >u_=mwnsm so mucmsm_op mcopuuczs m>wgamuwspcwim>_xm—mmm cowum~w_mco_umm mvmxpcco Pmuwmod mcw~_Fcapumppmu:H mew—manomFFoucu cowumpomm xu_>wuomnoo mcovuocaw m>wuwcmou mmcmwma mcpaou Amm .a .Nmmfi .cmmzv seposemam .oH =o_pmssommcmsh .m :oemsm>wo .m mmmcmsozo m>waumpmm .N :owmsm>om wave .o xuw>wupmcwm .m mmcoamms um»m_mo .¢ :owum~_ponezm ucmimcmmz .m pcmazumwmo .N cowumcwspsumwo .H mono: mammmuogq owgmcmu N m4m_u_swsa wmcmmmo umsauuzsum mmcmwmn umEE:m mcvaou o>Pmmmsaxu acwaou copposucou mcwaou umeazm mmszmmmz 0mm mmszmmmz omm co mwmosawm ovumzu «noguwz new new: mucmummpov< cmmzumm mmucmsmww_o ”m m4m

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vuca can acme;umgu< :o mmsoum memo: mmmucmusma cowpm:c_>wucfi mmmgcmusma pcmssumup< ”m m4mm can .Pm>mp oH. ”v we mucmo_$wcm.m mmzomosqq<+ .Fa>a_ mo.uv_oe “cauwt_=m_ms «mm.- mH.- ma. mmcmsmo m>wuwswsa +mm. “0.- mH. mmcmemo umszuoacam NH.- MH.- No. mmcmwmo omsszm oH. No. som.- mcwqou m>vmmmsaxm sflm. mo. sm¢.- mcwaou ua_.oso=oo mH. efi. hoN.- mcwaou cassam cowmcmuxw & 5.533qu N. 2353: amok mmucmucmm upmpaeoocH onuzv .mmmmwuosa emu new mommacmusmm “cascumug< cowumzbw>wUCH acowmcmuxm met. 9:53.; :mmZHmm mucmworzbou :owumpwgsoo "OH m.._m<._. 86 defense measures were correlated in the predicted direction with ' both measures of extension, although again, only some of these cor- relations approached or attained significance. CHAPTER VI DISCUSSION Introduction This study was both a descriptive and an experimental study. It was experimental in that it compared two groups, one with and one without illness, on a number of dimensions and hypothesized specific differences between the two groups. The study was descriptive, even given its experimental design, because so little is known about this area of research. Any research in this area only begins to carve out a small part of the territory to be explored. In essence, this study, which explored a number of variables relevant to the area of illness and adolescence, was a compilation of three studies: first, it looked at differences Qetwgeg two groups (adolescents with illness and adolescents without illness) on a number of variables; second, it looked at a number of variables witfljg_the illness group; third, it examined the behavior of particular variables gcgpgs the two groups. The breadth of the present study was both a strength and a weakness. Because of such a broad exploration, it wasn't possible to examine each set of variables in as much depth as might have been warranted. And, this research raises as many ques- tions as it answers. Nonetheless, it does point the way for subse- quent research efforts. After reviewing the results of this research as well as discussing its methodological shortcomings, this section will discuss possibilities for future research, as well as implica- tions for health care providers. 87 88 Methodological‘Shortcomings This section will explore the methodological shortcomings that may have hindered the success of this study. These shortcomings can be grouped into two categories: subject characteristics and instru- ment characteristics. Subject Characteristics. As mentioned earlier, there were a number\of factors that interfered with a random selection of sub- jects. Adolescents with cystic fibrosis are, by definition, a rare group, but fortunately because of continual improvements in medical care they are increasing in numbers with each year. (This increase is one of the reasons for the present study.) A second factor associated with this special sample which also limits selection has to do with the occasional concerns and reserva- tions of a referring health care practitioner, a parent or the adoles- cent himself about participating in a study of this kind. Oftentimes, the health care practitioner will screen out that adolescent who already seems hesitant about speaking of his illness. Parents may be concerned that a study of this nature will bring up issues they feel shouldn't be discussed, and which aren't discussed at home. Given that some degree of acceptance has to have already occurred if a parent, practitioner or adolescent consents to participate, one has a likely confounding of the very variables one wants to study. Parents who are open, flexible and tolerant enough to allow their child's participation often have children with similar characteris- tics. Adolescents who choose to participate might from the outset be seen to be more coping and less defended. Health care practi- tioners who place particular patients on a list for possible 89 participation in a study are making a selection based on certain characteristics. In the present study, only one or two possible participants were considered inappropriate for the study by their health care practitioners, although doubts were expressed about the receptivity of other possible participants and these doubts were often confirmed. This mostly voluntary selection process, then, raises the real possibility that one begins the study with a more coping group which, as hypothesized, may also influence the outcome on other related variables. Though the process of consent introduces bias into the subject group, there was no way to redress this particular short- coming. A third factor has to do with the age of the subjects. As dis- cussed above, while the original intention of this research was to study adolescents who were in their senior year of high school, it was impossible to acquire a large enough sample with such strict age criteria. Therefore, the criteria were broadened to include both older and younger adolescents. Adolescence is not a uniform period, a fourteen year old is surely strikingly different than a nineteen year old. And while less is known about how age influences coping and defense measures, it is known that at least through adolescence, age is linearly associated with the measure of future time extension. Therefore, age serves as a possible confounding factor, making it more difficult to clearly interpret the results. Finally, the small sample sizes stretched the limits of the statistical procedures. It may be that given larger sample sizes, trends toward significance may have emerged as significant findings. 90 Instrument Characteristics. There were many methodological short- comings with a number of the instruments used in this study. While most of these problems will be examined as they arise in relation to particular hypotheses, a few general remarks about the instruments can be made at the outset. Further pretesting of some instruments may ‘ have highlighted some potential problems. Further pretesting of the Sequence-Arrangement Test could have indicated a need for a greater time interval between the two administrations. While some pretesting was done on the Cystic Fibrosis Questionnaire, more testing might have pointed out its restricted range (although there were not enough adolescents with cystic fibrosis on whom to do extra pretesting). There were some statistical shortcomings inherent in the tests themselves. One example is the ego process factors used to measure coping and defense. The original attempt behind creating the factors was to reduce the redundancy in the scales, but reducing the indi- vidual scales to factors may have resulted in an accompanying loss of validity. The ego factors generally have lower validity coeffi- cients than the individual scales (although there are problems with validity on a number of the individual scales as well). Because of the low validity coefficients, Joffe and Naditch (1977) suggest that a number of the scales and factors be used and interpreted cautiously. (For both males and females, weak indices include the ego processes of rationalization, sublimation and substitution; for males, this also includes the factors of summed and primitive defense and expres- sive coping.) The use of the factors leads to a second problem. In using the factors in place of the twenty individual measures, one can't know 91 what particular ego processes in the factors may most be accounting for the significant results. Nonetheless, as an introductory study to determine whether this instrument might be useful in further research, there were enough significant findings to recommend further work with these scales. One might even want to develop a group 'ego profile' that could chart the twenty individual ego processes, making specific hypotheses about the separate scales. Summary of the Findings Hypothesis 1. The results showed that adolescents with cystic fibrosis were more defended but not significantly less coping than well adolescents. These adolescents were more defended across all defensive modes and more often relied on "primitive" modes of defense including regression, denial, repression, doubt and reaction formation. Within Haan's model, these adolescents would be labeled as 'defenders.‘ Interestingly, there were no differences between well adolescents and adolescents with cystic fibrosis in the overall pattern or configura- tion of coping and defense processes. Instead, there were only gugntj- tatjye differences between the two groups, with the greatest differ- ences on the Primitive Defense factor. The empirical literature suggests that parents of children with chronic illnesses, including cystic fibrosis, have been more protec- tive, restricting their child's independence to a greater extent than parents of children without illness (McCollum and Gibson, 1970). The results suggest that these adolescents rely more on regressive modes (expecting to be taken care of and viewing the locus of control to lie outside themselves). This may reflect an acceptance of the parents' needs to protect, restrict and take care of these children. However, 92 when Kellerman et. al.(1980) used a specific measure of locus of con- trol to study adolescents across varying groups of illnesses, they found that adolescents with cystic fibrosis scored comparably with well adolescents, both groups exhibiting higher internal than external control. A further look at the specific defense processes contribut- ing to the significant finding on Primitive Defense is warranted in subsequent studies. The significant finding on the Primitive Defense factor for adolescents with cystic fibrosis does not support a 'psychological innoculation' theory. This theory would imply that coping mechanisms are developed over time in response to continued stress. But this finding also does not indicate whether these defensive strategies are stable and well-entrenched or whether the adolescent is "disequili- brated." Kellerman et. al. found no differences on measures of state trait anxiety between adolescents with varying illnesses and well adolescents. They found, further, that anxiety was negatively cor- related with the time since diagnosis, suggesting that the chronically ill child learns to develop coping mechanisms over time. (An informal validation for this latter finding comes from an experience in the present study where the one adolescent who was diagnosed in adoles- cence - rather than in infancy as were all the other adolescents in this study - was one of only two adolescents who did not return his questionnaire and thus could not be included in the study.) While the present study provided a descriptive picture of the relative degree to which c0ping and defense strategies were employed, it may have been useful to have included an additional measure of anxiety, as well as a meaSure of social competence. These measures might have 93 provided a means of telling whether the defensive pattern endorsed by the adolescents with cystic fibrosis were indeed 'protective,‘ ego- syntonic and well-entrenched, or whether they are still fluid and reflect a process of continuing change. They might help discern whether this seemingly 'defensive' adaptation in some way comprises a coping pattern by lowering anxiety and helping in adaptation. However, Haan (1974), in her study of patterns of adolescent coping and defend- ing, found that 'defenders' and the low 'ego group' (a group neither predominantly coping or defending) exhibited the least change between adolescence and adulthood. This differs from the defensive "holding" pattern described by Freud (1973) where defensive processes enable the developmentally changing person to work through a time of transition. This "holding" pattern corresponds more to Haan's notion of coping which refers to "an ongoing, open organization." Hypotheses 2. This hypothesis looked at differences between the group of well adolescents and adolescents with cystic fibrosis on measures of future time perspective. As discussed above, coherence did not discriminate among any of the adolescents. In his study of high school seniors, Kastenbaum (1961) used a three week time interval between two administrations of a sequence-arrangement task and was able to assess coherence. In the present study, the approximately 45 to 60 minutes between the first and second administrations of the sequence-arrangement task did not prove to be an adequate interval since the adolescents in both groups had no difficulty consistently ordering the events in their future. Studies using psychiatric patients found coherence to be a discriminating measure even given a short time interval between administrations. However, a longer 94 interval seems to be required for non-psychiatric populations. The measure of density also did not prove to be a very discriminating variable. However, results on this measure were all in the pre- dicted direction and it may be that given a large sample, one might have had more statistically significant results. While the quantity of events described by the two groups of adolescents didn't differ significantly, there was, as noted earlier, a qualitative difference. As discussed in the previous section, while the future goals did not always differ between the two groups, the ways in which they were presented often differed strikingly. Even a look at the kind of language used highlights important differences. The adolescents with cystic fibrosis often presented their future in tentative, con- ditional ways: "I'd likg_to get married; I'd ljkg_to work: mgygg when I turn 17 or 18 I'll get a job as a physical therapist." The boy who during the testing found out he had new, serious complications to his illness was most glib: "Get a job in the hospital and probably be rich." It may be that an extended or semi-structured interview would have elicited and been sensitive to these kinds of qualitative differences. As predicted, adolescents with cystic fibrosis did show a more constricted future time extension. The majority of these adolescents felt they would have most of what they wanted ggfgge the age of 30, while the majority of well adolescents thought they would have most of what they wanted gfteg_the age of 30. No adolescent spoke directly about considering their future in light of their illness, although the family of one sixteen year old boy had recently bought a business which they hoped their son would manage when he graduated from high 95 school. It was planned that if he had periods when he needed to be in the hospital, other family members would share the responsibility of running the business. (This information was shared by one of his parents when he was out of the room.) On the Sequence-Arrangement Task, this adolescent gave only one response: "After graduating, I'll work for my dad." Other adolescents presented future scenarios similar to those of the well adolescents which included marriage and children, although in contrast to the well adolescents, many of whom presented elaborate plans after retirement, none of the adolescents with cystic fibrosis talked about their post-retirement activities. A number of contradictory interpretations might be brought to bear on this finding of a constricted future time extension among the adolescents with cystic fibrosis. According to the empirical litera- ture, maladjusted and unhappy adolescents showed more constricted future time extensions because the future is no longer available as a place to project wish-fulfilling fantasies. Are adolescents with cystic fibrosis unhappy adolescents and is this the factor that accounts for the more constricted extension? The younger the child, the farther away the future seems to be and, according to Fraisse (1963), the "temporal horizons" expand as the individual gets older. Does this constricted extension have to do with a more childlike temporal orientation where the future seems more remote and less real than for the 'older' adolescent? Or, is this a defensive posture as suggested by Wohlford (1966) who found that unpleasantness in the future is avoided? Is it a defensive posture resulting from an awareness of death as suggested by Dickstein and Blatt (1966) who found that adolescents with a high manifest concern about death had 96 shorter future extensions? Or, does it imply a more realistic under- standing of some of the limitations imposed by cystic fibrosis on the life span? The results from the previous hypothesis may lend some help in interpreting this issue, although a number of questions will nonetheless remain unanswered and will be addressed again at the end of this section. There is no direct evidence from this study to suggest that adolescents with cystic fibrosis will have a more childlike approach to the future. The higher defensiveness on the ego factors as des- cribed in Hypothesis 1 would tend to suggest that this constriction is a defensive posture as described by WOhlford, Dickstein and Blatt, rather than a realistic appraisal of the limitations imposed by the disease, but this interpretation is given with caution since the evidence for this interpretation is indirect. Hypothesis 3. The measures of attachment and individuation did not act in predictable ways and did not discriminate between the two groups. It may be that this hypothesis was a poorly conceived one, or it may also be that the measures did not adequately measure what they were supposed to measure. Both of these possibilities will be explored. As a testing instrument, the Separation Anxiety Test falls some- where between a projective and a structured task. Unlike a projec- tive task, the respondent endorses predetermined responses that are provided as part of the test. One assumption underlying the Separa- tion Anxiety Test is that "children can select and report reactions to separation which genuinely reflect how they feel." (Hansburg, 1980). The Separation Anxiety Test is also thought to reveal "what 97 mechanisms of defense against separation anxiety are mobilized.‘I However, since the intent of the test statements are obvious to the respondent (one clearly endorses a response that says one is frightened or angry or miserable), those who don't want to openly acknowledge these feelings might instead respond defensively. For instance, one boy with cystic fibrosis had a highly positive, dense, well-elaborated future on the Sequence Arrangement Task. Having recently received a scholarship, he was looking forward to college and a career, and he was planning to live a long life. Out of all the adolescents in the study, he had the most constricted record on the Separation Anxiety Test, endorsing only those items reflecting adaptive reactions and well-being: "He will do his best to get along; he is free to do what he wants; he was just going away to have some fun." (However, following strictly the interpretation rules devised by Hansburg, this protocol would not be interpretable because of its low number of responses). Other than the low number of responses and the lack of variety among the responses endorsed, both characteristics suggesting a highly constricted profile, the response pattern suggests a well- adapted though overly individuated adolescent. One might infer, though, that the constant and insistent presentation of himself in the interview as cheerful and able reflects a somewhat brittle and inflexible adaptation given the constriction and inflexibility of his response patterns on the test. This example was used in order to illustrate that one can make use of the Separation Anxiety Test if one takes more than the quantitative measures into account. Includ- ing all nine factors instead of only the individuation and attachment factors might also have added other information that could have led 98 to differences between the two groups . The transparency of the responses perhaps interferes with a more sensitive, quantitative mea- sure since it confuses the "genuine" response with the "defense against separation anxiety" as in the example described above. This attribute of the test may have something to do with the insignificant findings on this hypothesis. One must also take the other position: rather than an inability of the test to tap deeper, underlying responses to individuation and attachment stimuli, there are indeed no differences between well adoles- cents and adolescents with cystic fibrosis. One then has to ask what might have been wrong with the initial hypothesis. The literature suggests that adolescents with cystic fibrosis were likely to be more attached and less individuated. In this study, both groups were only weakly attached when compared with Hansburg's normative data. In fact. when looking only at the mean scores, adolescents with cystic fibrosis were both more individuated and less attached than their well counter- parts. However, the mean scores for the well adolescents more closely approximate Bowlby's "elastic band“ and Schaffer's (1968) "balance" between individuation and attachment; that is, there is only a slight difference between the individuation and attachment means for well adolescents compared with the means for adolescents with cystic fibro- sis where these factors are more imbalanced. Hypothesis 4. In her study, Farkas (1973) divided her sample into good versus poor current levels of physical functioning and found no differences between the two groups on measures of future time perspec- tive.' Similarly, in the present study, results from the correlations between the severity of illness and the measures of future time 99 perspective, ego processes, and attachment and individuation percent- ages were equivocal. It had been hypothesized that the more severe the illness, the less dense and more constricted the future time per- Spective and the more defended and attached the adolescent. While most of these correlations were insignificant, a number of relation- ships were significant: the more severe the illness, the less coping the female adolescent; the more severely ill the male adolescent, the less individuated he was. Thus, for males, the process of individua- tion seemed more vulnerable to being interfered with by his illness. This finding is an important one and is similar to Haan's finding where patterns of ego processes were more closely related with patterns of chronic illness among men than women. She suggested that illness has greater social-psychological consequences for men. That is, ill- ness may more seriously interfere with the developmental task of individuation for males who are expected to be more independent while women are permitted greater degrees of dependent behavior. The greater association between coping and severity of illness for females may have to do with an artifact of the study where females turned out to be somewhat more seriously ill than the males in the sample. Three out of the ten males in the sample were given the highest ratings, thus indicating only minimal symptomatology. In contrast, only one female received this rating and three of the ten females were in the hospital during some part of the testing process for treatment related to their illnesses. Hypotheses 5. In was expected that adolescents who rate them- selves differently from their health practitioner are not realistic- ally acknowledging the parameters of their disease. This hypothesis 100 was only partially supported. Findings from another study might help in understanding why the results for this hypothesis were not more convincing. Kellerman et. al.(1980) found that when adolescents with illnesses are asked to rate themselves on a present measure of health, they do not compare themselves with the general population of well adolescents. Rather, they use themselves as a kind of baseline. For example, if they're not in the hospital and haven't had any recent difficulties, even if they have cystic fibrosis or leukemia, they none- theless feel "relatively" healthy. Thus, a self-rating on health is a "relative" measure and when children with life-threatening illnesses feel "relatively" good, they will rate their health as 'good.‘ In the present study, some of the children who participated were in the hospi- tal during a part of the testing processes. They nonetheless did not rate themselves as seriously ill, even as they sat filling out the rating sheet in a h05pital bed. Thus, the physician or nurse may have been rating the adolescent in "absolute" terms according to the Shwach- man scale while the adolescents with cystic fibrosis were rating them- selves in relative terms. One might have circumvented this problem by asking a different question. Rather than only asking, as the present study did, "How would you rate your health today?" one could also ask, "How do you think your physician or nurse would rate your health today?" The results on this hypothesis and the problems with interpreting the results point out the difficulties in using the factor groupings rather than the individual ego processes. It is very difficult to know beyond an inference what specific processes might be accounting for a particular correlation between a factor and another variable. lOl For example, when looking at the unexpected finding of a negative cor- relation between defense and divergence among the females wfith cystic fibrosis, one wants to know which of the specific defense processes might be most significantly contributing to this finding. Hypothesis 6. When the Cystic Fibrosis Questionnaire was being designed, it seemed important to include information that might have been encountered during a standard visit to any of the clinics. By including often-encountered information one could also determine whether clinics were successful in disseminating the kinds of informa- tion they thought all adolescents should know about. With hindsight, it seems as if one would have had a stronger test of the hypothesis if there were a greater range of questions, from the commonly encountered to the highly specialized fact. In this way, one could then tap those adolescents who deal with the world by trying to learn everything they can about their illness in contrast to an adolescent who casually picks up more_commonplace information in the course of a clinic examination. Among the males with cystic fibrosis, the extent of their know- ledge about cystic fibrosis was significantly and positively related to the measure of Controlled Coping and negatively related to Summed Defense. (There were no significant relationships for the females.) Since the factor of Controlled Coping includes the cognitive pro- cesses of objectivity and intellectuality (as well as the attention- focusing process of substitution) one again might want to look at the individual factors in a subsequent study to see whether the cognitive factors (which deal with how information from the world is managed) indeed account for the significant associations. l02 Because the findings are correlational, one can't determine which variable precedes the other: does greater information lead to greater coping and less defensiveness, or does greater defensiveness mitigate against receiving more information about the illness? The latter suggests a particular defensive style. This hypothesis has important implications for practitioners working with adolescents with cystic fibrosis. If in subsequent studies it can be determined that more information leads to a less defensive style, practitioners would want to spend more time with the adolescent patient dissemina- ting information. Theoretically, this would lead to a greater sense of their ability to control, plan and engage in purposeful behavior. If the defensive style mitigates against taking in information, the practitioner will have to appreciate that with this particular adoles- cent, more work will need to be done to get the same amount of infor- mation across. Hypotheses 7 and 8. These final two hypotheses were constructed for two purposes. First, they attempted to explore some of the theoretical assumptions underlying this study and to explore the behavior of some of the study's major variables and the relation- ships between them. Since coping processes are described as purpose- ful and "pulled towards the future," it was hypothesized that measures of future time extension would be positively related to coping measures. In the same way, since individuation implies a moving out beyond the immediate sphere of family into a realm of future persons and possi- bilites, it was also hypothesized that individuation would be related to coping and in turn to extension. And, while not directly addressed in the hypotheses, there was a brief examination of whether these 103 relationships would be different for adolescents with cystic fibrosis compared to well adolescents. Among all the adolescents, those adolescents who were more indi- viduated had more dense future time perspectives; adolescents who were more attached were less coping; adolescents who were more coping on the SUITllled and controlled coping factors had longer future time exten- sions; and finally, those adolescents more 'primitively' defended had shorter extensions. These findings lend some support to the hypothe- ses. However, one gets a different perspective on these findings when examining the subsamples. One finds that male adolescents with cystic fibrosis who are more attached have futures that are seen to be less dense, while more indi- viduated adolescents had more extended and dense future. Among the male adolescents with cystic fibrosis and the well females, there is a relationship between individuation and longer future time extensions. Further, highly attached well females were more defended, while highly attached males with cystic fibrosis were less caping but not neces- sarily more defended. This latter finding is an interesting one. Among the well female adolescents, attachment is associated with organized defensive patterns, but for male adolescents with cystic fibrosis, greater attachment doesn't lead to organized defensive patterns, but it may interfere with the development of organized coping processes. Interestingly, while the measures of attachment and individuation did not discriminate between the two groups as described in a pre- vious hypothesis, they did prove to be significant variables within each group. The measure of attachment seems particularly important lO4 to the males with cystic fibrosis for whom attachment is strongly related to patterns of coping and defending. For these adolescents, individuation is also strongly associated with an increased projec- tion of themselves into the future. Again, this may be related to Haan's finding that illness seems to have a greater impact on the lives of men for whom certain possible accompaniments to illness (e.g. regression, dependency) are much less acceptable within the male role. Thus, while one group of adolescents isn't necessarily more attached or individuated than another, the degree to which he is attached or individuated (particularly for the male adolescent with cystic fibrosis) is strongly associated with future time per- spective and coping and defense processes. In summary, there seem to be some significant relationships between the ego processes, individuation and attachment percentages, and the measures of future time extension as hypothesized. Additionally, these relationships seem fairly consistent across all the groups, although particular variables are stronger among particu- lar subgroups as described above. Summar In the preceding pages, each of the hypotheses was addressed, some of them producing significant findings and some with inconsistent or equivocal results. From these results, one can derive a descrip- tive picture of the adolescent with cystic fibrosis as compared with his well counterpart. The adolescent with cystic fibrosis is more defended, at times using more poorly integrated, primitive patterns of defense than his well counterpart; his future is not less dense or coherent but this adolescent does not project himself as far into 105 the future because his future time perspective is a shorter one; and he is neither more attached nor less individuated than his well counterpart. Among the adolescents with cystic fibrosis, males who know more about their disease are more coping and less defended; males who are more attached are less coping but not necessarily more defended; and these attached males have less dense and extended future time per- spectives. Among all the adolescents with cystic fibrosis, those who viewed their illness in a way similar to that of their health care practitioners are somewhat more likely to be coping. This is the descriptive picture of the adolescent with cystic fibrosis that emerges from this study (a picture of the male adoles- cent emerging more consistently than that of the female adolescent). One now has to ask what these findings mean for development and for the adjustment and adaptation of the adolescent with cystic fibrosis. General Discussion and Future Research These findings answer some questions and raise a number of other questions. These unanswered questions will be discussed and any pos- sible future research efforts which could help answer them outlined. It isn't possible to determine whether the greater degree of defensiveness in the adolescents with cystic fibrosis reflects a "disequilibrated" stage, a kind of transition from one stage to another, or whether the effects of their illness interfere with the development of greater coping strategies. The fact that the adoles- cents with cystic fibrosis do seem to use what are labeled as more primitive defenses might suggest that these defenses are not con- solidated and do not function smoothly to protect the adolescent. This finding argues against a theory that has been proposed, a 106 psychological innoculation theory, which would suggest that because of their illness, these children have had to learn how to be more coping and resilient. It may be that a behavioral measure of caping would lead one to different conclusions about the adolescents in this study. But based on the findings in this study derived from a measure originally adapted from a personality inventory, these adolescents are not more coping. To investigate this problem further, one would need a subjective measure of anxiety and a behavioral measure of social adaptation (for example, ratings by parents and teachers). One might then see how the descriptive pattern of ego processes emerging from this study is actually experienced by these children. These additional measures might then help one understand whether the 'defensive' pro- cesses described in this study are indeed 'coping' processes, although the findings in this study do not support this notion. Does the shorter future time extension represent a defensive turn- ing away from the future or does it imply a more realistic understand- ing of some of the limitations imposed by cystic fibrosis on the life span and thus represent a "reconciliation" between the disease and the adolescent. One might have wanted to include a more direct measure of whether these adolescents anticipated a shorter life span and whether they clearly envisioned an earlier death. Sabatini and Kastenbaun (1973) asked adolescents in college to talk directly about their notions of their own deaths. However, among a group of children with a life- threatening disease, this is often a difficult issue to study since it raises many reasonable objections by parents, practitioners and research guidance committees. Rather than addressing this issue directly, the present study tried to infer what the adolescents might be thinking 107 about dying and the effects of cystic fibrosis on their life span. This was clearly one of the shortcomings of this study. How can one explain the insignificant results on the attachment and individuation measures when comparing well adolescents and adoles- cents with cystic fibrosis? While the theoretical literature and some of the empirical literature would suggest that adolescents with cystic fibrosis are more attached and less individuated, one study (Kellerman et. al. 1980) found that the adolescent with cystic fibrosis (as well as diabetes) feels he has some measure of control over his disease through the influences of diet and exercise. Therefore he does not feel as helpless and dependent as some children with other kinds of disease for which there is less active treatment. It may be that medical practitioners should work with adolescents with cystic fibro- sis around those particular aspects of the treatment over which the adolescents can exert control and autonomy. Adolescents with cystic fibrosis do have higher absolute mean scores on the measure of individuation than the well adolescents (although this difference does not approach statistical significance and the variance on this variable is great). One could ask, however, whether the adolescent with cystic fibrosis is more individuated than his well counterpart. That question can't be definitively answered because there were no significant differences between the two groups. However, if adolescents with cystic fibrosis were found to be signifi- cantly more individuated, this finding would lend support to the psy- chological innoculation theory. It would imply that the experience of having cystic fibrosis, and the kinds of issues these children with cystic fibrosis have had to face at a very early age might have 108 propelled them towards an earlier individuation and adulthood. While the findings in this study were not conclusive, it might still be an area to look at further in subsequent research studies. One final formulation about adolescence and cystic fibrosis that takes into account most of the major research variables included in this study will be proposed. It differs from the original formula- tion proposed by incorporating some of the findings from this study. It may be that adolescence, with its increasing push towards individua- tion, brings the adolescent with cystic fibrosis into greater contact with concerns about the future and death (and perhaps cystic fibrosis propels the adolescent towards individuation even more quickly). This leads to a greater defensive stance and to a less extended future time perspective. Thus, this study ends with a new formulation or question. The findings are not conclusive in a number of areas but they do not support the notion that the experience of having cystic fibrosis has strengthened or 'innoculated' these children. The findings show them to be less coping and to have less far reaching projections of them- selves into the future, but at the same time, they were neither more attached nor less individuated than the well adolescents. Thus, while there is no evidence to support a theory of psychological innoculation, there is also no direct evidence to support the notion that these adolescents are having particular difficulty with the developmental task of individuation and separation. In conclusion, this study points the way for future research efforts. It has made some specific suggestions for subsequent research projects. Additionally, it has made recommendations for health care providers who work with this particular group of adolescents. APPENDICES Appendix A Age Distributions for Male and Female Adolescents with and without Cystic Fibrosis l1??? Freguency Agg_ Freguency Females with Cystic Fibrosis Males with Cystic Fibrosis 14 3 15 2 16 4 20 1 X = 15.60 S.D. = 1.77 Var. = 3.156 14 2 16 5 17 1 18 2 X = 16.10 S.D. = 1.37 Var. = 1.87 Females without Cystic Fibrosis Males without Cystic Fibrosis 14 2 15 1 16 2 17 3 18 2 X = 16.20 S.D. = 1.47 15 16 18 N010) X = 16.10 S.D. = 1.10 Var. 1.21 Appendix 8 Separation Anxiety Test PLEASE NOTE: Copyrighted materials in this document have not been filmed at the request of the author. They are available for consultation. however, in the author’s university library. These consist of pages: Appendix B. pages 110-122 Appendix C. page 123 (Incomplete Sentences Test) Appegdjgg I]: page 194 (Fvnn‘l‘s Test) University Mic rofilms International 300 N Zeeb Rd., Ann Arbor, MI 48106 (313) 761-4700 110 Appendix B THE SEPARATION ANXIETY TEST Directions to the Examiner Besuretohavearoomthatisundisturbedbyoutsiders.Havethechildsitoppositetoyou. Thebookcontaining the picturesandthe statementsshouldbeplaceddirectlyinfrontofthe childwhileyouhavethemsmictionsforthechidinfrontofymlnadditionyoushouldhave the recording chart in front of you. Onthechart write the nameofthecl'iild,thechild'sage.boyorgirl.dateofthetest,andthe mofthefacilityinwhichthechildislivingltwouldalsobeusefultohavethenumberof yearsinwhichthechildhasbeenlivinginthisfacilitywrittenonthechart. Readtheinstructionstothechildandtl'ienhavetheyoungsteropenthebookandtothe firstpicture.Telll'iim(her)toreadthetitleunderthefirstpictureandtostudythepicture. ThencallhisattentiontotheprintedpageoppositethepichneTellhimtoreadthedtleatthe topofthepageflhenasklimtoreadthequesfiomaloudasfollows: Didthiseverhappunoyou?Yes Na lfitddn'tmanyouimaghehwitwouldfeelifitdifiYes No Rxad'TfaWa'ad'Wfor‘No’drecdymdaanommmmeraLlhmsay, Thechidfeels— mdrepeat tolfintoselectasnunystatementsbebwumichtelhmuthechfldfeehNow indcate thathecanmaddestatennntstohhmeflandtdlyoumemmberdthestatenunu which he has selected Encircle these numbers under the appropriate Roman numeral for the picture. Proceed in this same manner for each picture and for each page of statements. During the examination it is important not to prompt the child in any way. You must, however, remind him that for each picture he should be sure to start out reading the statements at the top and read them in order down the page. It is important that youencircle the numbers under the proper picture, otherwise the test will be invalidated. If the child asks my questions, simply reassure him to use his own judgment and to indicate which statement or statements he thinks apply to the child‘s feefings. If the child selects only one statement on aparticularpicture,remindhimthathemayselectasmanyofthephraseshemaywish. Should the child be unable to find any applicable statement, ask him to explain in his own words how the child feels and record this on the back of the chart mm the appropriate number for the picture. Our experience has shown that this will rarely ever happen Wlnnyouhawcmnphteddnadnfirishafionddwtestardcfisnfiseddnchfldhmuld behelpfultorecordymuobservatbnsdthechid’sbehaworondiebackofthechan. Diectio-etotheCfllll '1'hisisnotatest.ltisanexperimenttofindoutwhatyoungmoplefeelaboutsomepictures thatwehave. Therearenorightorwrongamwers. Weareonlyinterestedinthewayyoufeel about the pictures. lamgoingtoshowyouthepicturesoneatatime. Foreachpicturetherewilbeanumber ofstatements about thechidinthepictureYouwillbeaskedtopickoutasmanystatements asyouwishthattelhowthechildfeels. Nowlet’sbeg'u'iwiththefirstpicture. Directions!“ Add“ Tl'n'sisnota test norare there any right orwronganswers.Weareonlyinterestedinthe wayyoufeltor,thewayyouwouldhavefelt,ifyouhadbeenthechildineachofthepictures we are about to present to you. In other words we are asking you to imagine that you are a child and to react as if the situation had occurred or might have occurred when you were a child. For each picture there will be a number of statements about the child in the picture and you will be asked to select as many statements as you wish which indicate how the child feels. Youmerelyhavetoreadthemtoyoursdfandreponabudthenumbersnexttome statements you have selected. 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Write in the number that makes the sentence true for you. 1. I often think of what I will do within the next year(s). Sometimes I wonder what I will be like when I am years old. I have very clear plans for the next year(s). I have planned a few things as much as year(s) ahead. I don't see much sense in planning more than year(s) ahead. I hope I will have gotten most of the things I want out of life by the time I am years old. Being years old is so far away that I haven't thought much about what I will do then. I like best thinking about when I will be years old. I often think of what I will do when I am years old. 124 Appendix D Events Test Directions: Different pe0ple have different notions of when things will occur to them in their lives. I would like to ask you when you think particular events will happen to you. I am going to read you a series of sentences and would like you to give me the age that makes the sentence true for you. 1. You have reached middle age 2. Your first child is born 3. You get a place of your own 4. You are too old to be physically active 5. You get your first full-time job 6. You marry 7. You finish school 8. Your mother dies 9. You can say that you have most of the things you want Appendix E Statistical Properties of the Ego Scales 125 Appendix E Means and standard deviations: student subjects CPI based scales Objectivity Isolation Intellectuality Intellectualization Logical analysis Rationalization Concentration Denial Tolerance ambiguity Doubt Empathy Projection Regression ego Regression Sublimation Displacement Substitution Reaction formation Suppression Repression Summed coping Summed defense Controlled coping Expressive coping Structured defense Primitive defense wwhbmmwwmmpmwwwmbwwmmwwwmm I O O O C O C O O C I C O O O 0 Females whwwmmwmmmwmwwmmmwwmmmbwmN O C O O O C O O C C O O O C O O O . Note: CPI sample size: (Haan, 1977, p. 323) Males N = 95; Females N = 108 126 Appendix E Means and standard deviations: adult subjects Males Females CPI based scales Mean §D_ Mean Objectivity 20.68 4.06 16.39 Isolation 13.90 3.22 12.83 Intellectuality 17.34 5.16 15.69 Intellectualization 18.76 5.52 14.05 Logical analysis 16.28 4.34 15.07 Rationalization 12.33 3.20 13.61 Concentration . 21.65 3.54 19.95 Denial 18.62 4.26 19.98 Tolerance ambiguity 18.20 4.66 16.47 Doubt 8.22 5.41 13.36 Empathy 18.73 3.51 19.48 Projection 10.61 3.83 7.69 Regression ego 13.66 4.42 14.40 Regression 10.29 4.92 11.59 Sublimation 22.04 2.86 22.45 Displacement 11.82 4.48 9.48 Substitution 20.32 3.07 17.11 Reaction formation 18.95 3.78 14.80 Suppression 23.77 3.62 24.41 Repression 15.07 3.64 14.90 Summed coping 18.42 3.83 18.49 Summed defense 12.75 3.63 10.10 Controlled coping 28.49 5.65 19.43 Expressive coping 18.99 5.64 17.83 Structured defense 21.99 4.98 15.61 Primitive defense 10.59 4.93 15.56 mmhpwwpwbwAwbhmwmhnwwwammw Note: CPI sample size: Males N = 111; Females N = 132. (Haan, 1977, p. 322) 127 Avwm .0 .mnmfi .:00Iv . . . . goo 0>_000:qu . 00:0.mu m>...s.gm «N cm as. WW. m 00:0000 umgawuagpm um” mm” mcwgom um..o:u=ou - .. 2.. 0.0% mm. cm. cowmmmgamm - . copwauppmnam .m. we. cowumsgow copuummm -. mm . . 3 -. mm. .m. co.mmmgmmm Nm 0m. . a a «N. we. cowpumnogm mm” em. >300 Eu «0. 0m. unzon me we xuwzmwaam mo 00:0:0Pop . .N. .mwcma . . cowpogucmocou MW. - cowumuwpmcowumm .0” mm” 0M0zF0cm .muwmm. mm. “m. co.00~._0=uomppmac. cc. mm. u__03000_. p H mm. mm. :o_um_o0. mm mm au.>_pumnno 00_000 0000: .00 0.050: 0.0: 0.020: 0.0: mm.mum om. 0;. .0 03:0.0...oou ap.u__m> m xwucoaa< 128 .000 .0 ...0. .0000. .00000000 0>...E.:0 .0 00000. .00000000 0000003000 .m 00.00. .mc.aou 0>.000:0x0 .N 00.00. ”00.000 00..o:0 .00. u 2 .00.050. m0.. u 2 .00.0: -:ou .. 00.00. "000000. 0:. :0. 00:00.0 0:02 0.000. m:.zo..o. 0:. .0. m.. 0.. ... mm.- e..- 0m.- m..- 00.00mgama mo.- o..- o¢.- 0~.- .0. .0. mm. o0. 00.00000030 0.. ... cm. .0. o..- om.- ~.. ...- 00.00500. 00.00000 0.. .o. m..- co. mm. ... N0. ... 00.030.00030 0.. .o. on. we. 0N.- m..- m..- .0.- u:05000.00.o m..- mm.- cm.- .o.- .0.. «v. N.. 0.. :o..0s..:3m 0.. me. uh. me. .o. 0.. mm.- .m.- 00.0000mmm .N.- mo.- No.- .o.- 00. ms. mm. ... cam-00.0mmgmmm 0m. 0o.- 00. .0. e~.- m..- m..- .0.- 00.000n000 mm.- m..- m..- eo.- ... 0.. mm. 0.. >000050 Nc.- om. mm. .m. 0.. mo.- 0m.- .o.- .0300 00.- 0.. 00. N..- .N. 00. 00. 00. .0.=0_050 00 00:000.o. on. m..- o.. mm. mo.- 00.- 0m.- om.- .0.:00 mo.- 00.- o~.- 0o.- mo.- ~.. 0.. . mm. 00.0000000000 co. mm. o.. 00. o..- N~.- m~.- .~.- :o..0~..0:o..0m 0N.- mm.- m..- no.- mm. 00. ¢.. 0.. 0.0».000 .0u.mo. co. ... 0.. 0.. c..- No. Nm. mm. 00.000..03000..00:. m..- mo.- mo. no. mm. .0. 0.. mm. a...03000..0.:. ON. 0.. 00. mm. mm.- ~0.- .o.- No.- 00.00.00. .m.- 0..- m..- m..- 0m. 0m. 00. 0.. >0.>.uumwno 0.020. 0.02 0.050. 0.0: 0.050. 0.0: 0.020. 0.0: 0 00.00. m 00.00. N 00000. . 00.00. 000.000. 00.00. 000000000 om. mo 0.0».0c< 00.00. m x.0:030< 129 Appendix F Cystic Fibrosis Questionnaire CIRCLE EITHER TRUE 0R FALSE: 10. 11. 12. 13. 14. 15. Enzymes need to be taken with snacks. T or F Under some circumstances, cystic fibrosis may be contagious. T or F If you are not coughing, you don't need postural drainage. T or F Something a mother eats during her pregnancy may contribute to her giving birth to a child with cystic fibrosis. T or F If there is fresh blood in the sputum, the doctor should be called. T or F Snacks between meals are to be avoided. T or F More sputum means one is getting better. T or F Jogging is bad for people with cystic fibrosis. T or F Carriers of cystic fibrosis can be detected by the sweat test. T or F Low salt levels cause weakness and nausea. T or F You can stop taking antibiotics once you begin feeling better. T or F A brother or sister of a person with cystic fibrosis has a 25% chance of having cystic fibrosis. T or F One can diagnosis cystic fibrosis by listening to chest sounds. T or F Large, bulky bowel movements are caused by not enough pancreatic enzymes. T or F Cystic fibrosis is caused by genetic inheritance. T or F 130 Appendix G Shwachman Scale CLINICAL EVALUATION AND GRADING CRITERIA FOR PATIENTS WITH CYSTIC FIBROSIS PULMONARY PHYSICAL POINTSI CASE HISTORIES FINDINGS AND COUCH GROWTH AND NUTRITION CHEST X-RAY 25 Full activity No cough Maintains weight and heidit above No evidence of overinflatlon Normal eserclso tolerance Normal pulse and notation ty-iifth centile or com- No increase in rnarkhgs and endurance No evidence ofoverinlatbn patible with amilial pattern No infiltration or atelectasis Normal motor developer-st Lun clear to auscultation mu mass tone N personality and Good posture Normal mbcutanemts fat tion No clubbbg Normal sexual maturation Normal school attend-tea Good appetite Well formed almost norrnal deals 20 Slightlirnitatieaofm Occasionalhachingcough Maintains weightand above Mhirnalevldenceofoverhhthn activity Clearingofthreat 10th percentileorsli below Mildaccentnatienofbrencho- Tires at end of day or ah Resting lse and respiration familial vascular markings prolongedesertioa Coodmusc mass/tone Noinlltratienoratalectads Less energet Mild overinlation Slirhtly decreased subcutaneerss Low normal ranged-rotor Occasional. mallylecalieedwhasah at rnent breath sounds. rhonchi.or Slightly retarded seaual naturalis- Oceasionm ally irritable or longed expiratory phae g‘toolsm appetiter and My ve posture more requmt Good school stand-sea clubbhgzt: to 1+ abnormal IS Mayrestvoluntarily Mildchronicnrmrepetlivaongh Mahtainswi andheightabova Moderateoverlnhtha ‘I'iresaftereaertion hthebnmmhgmmw percen lncreasedA-Pdiasneter Fair school attendance ionor crying. or oeudoe- below familial pattern Lima fields more radioluoent M y inactive ally during the day Weight-small ydefllcient Diaphra moderately depressed Slight retardation No night cough Inaeased brutehovasarlar Lackingspontanefly rationandpulseslightly Pairmusclernass/tone markings Passive or irritable ted Moderate deficiency of fibers- Localiaed or patchy atelectash Increased A-P diameter ad taneous fat W um m gnu Abdomen sli iy distended Coarse breath sounds Maturation retarded Occasional localised rah. m Fair appetite ore wheeler no.usuallya Moderate rounding of she-lbs! Ioatin occasionally fear but 14+ clubbhg formed WM! M Weight and height below :hd Mashed lo and esercisetoler-tca tive. moraluctlvo. and mm percerttile Marked increase in A-P die-sets Dy alter esertien parosysrna Weight deficient for heigll Diaphragms markedly depressed M te mgtkor‘rletardation erattan and pulse moderately ml” mass/tans Narrow cardiacusialelaouette F . irrita . ugghh. or I subcutaneous m a .13-71.0 Moderate to severe over'lnhtbn fat lobar atelectasis Poor school attendance. may often chestdeformity Moderate abdominal distention Persistent loci of infiltration require hosne tutor lair-s rhonchl. or wheezing anally Failure of sexual maturation Localized cysts present often no adolescent growth spurt Marked increase in markings Bounded shoulders and ioreard mw‘fei hull-y ( . head 3 I?" Y 0'1““!- - atty Clubbing 2.3+ and oul smelling Usually cyanosis 5 Severelirnitationofaalvhy Severe rossmalfrequentmro- Malnourishedandsnmted Extensivechanges and ort dual: coryrgh often associated Weak. flabby. small muscles Severe overinllation Inactive or conll to bed with vomiting or hernoptys'ls Absence of subcutanemrs fat bob" or widespread atelectasis ml! rda Night cough chycardla [arfiffoflabbn protuherant Wfi inlilgationf tion M rnotorreta tion a ypnea/ta a men pres cyst orma Apathetic or irritable Barrel chest Failure to grow or gain. often will Bronchiectasis and abscess Cannot attend school Generalized fine and mane tales. weight loss formation rhrmchi. musical wheeees Bulky. frequent. foul. fatty stools Poor posture Frequent reds prolapse 34+ clubbing . Cyanosis From: Gu1de to D1agnos1s and Management of Cyst1c F1br051s, A Syllabus for Physicians. Prepared by the Professional Education Committee, Cystic Fibrosis Foundation, December, 1979. 131 ..0>0. 0..uv.00 0000.0.00.0 000000000<+ ..0>0. 00.Uv 00 0000...00.00 000. 00.- 00. +00. 000. 000. 000. 0000>0 .00. .0.- 0.. 0.. 0..- 00.- 000000000 000.00000. ”00.0000x0 00. +00. 00.- 00.- +00. ...- 00.0000 "00.3 0000.00000 0 00.0000.>.00. 0..- 00.- +00.- 00. .0. 0.. 000. 000000 .00.- 00.- 0.0.- 0.. 00.- 00. 000000000 000.00000. "00.0000x0 00.- +00.- +00.- 0.. 000.- 0..- 00.0000 "00.: 0000.00000 0 0000000000 0.": 0.-z 00-0 0.-z 0.-z 00-z 00.0200 00.02 00.020. 00.0: 0.000... 0.0000 00000.0 0000000.00< 0.00.0.0 0.00.0 00.0 0000000.ou< 0.0000.0 0.0000 00000.3 000 00.3 0000000.oc< 0002< 00.0000x0 02.. 000000 .0 0000000: 000 00000000000 00.0000.>.00. 000 000200000< 0003000 0000.0...000 00.00.00000 I x.ozmam< 132 APPENDIX I Correlation Coefficients Between Future Time Extension, Individuation And Attachment Percentages and Ego Processes for Adolescents Without Cystic Fibrosis. Adolescents without Cystic Fibrosis Females Males N=20 N=10 N=10 Incomplete Sentences Extension Correlated With: Summed C0ping .14 .36 -.28 Summed Defense -.14 -.49+ .02 Controlled Coping .28 .72* -.27 Expressive Coping .22 .62* -.44+ Structured Defense -.12 -.60* .10 Primitive Defense -.39* -.65* -.10 Events Test Extension Correlated With: Summed Coping .36* .37 .26 Summed Defense -.06 .02 -.25 Controlled Coping .36* .43+ .32 Expressive Coping .07 .21 -.22 Structured Defense .18 .12 .02 Primitive Defense -.24 -.36 -.10 Individuation Correlated With: Summed Coping .36* .17 .48 Summed Defense -.37* -.30 -.44 Controlled Coping .35 .45+ .28 Expressive Coping .09 .51+ -.30 Structured Defense -.01 -.08 .02 Primitive Defense -.58* -.63* .56 Attachment Correlated With: Summed Coping -.26 -.23 -.28 Summed Defense .33+ .48 .27 Controlled Coping -.43* -.52 -.34 Expressive Coping -.07 -.23 .14 Structured Defense .23 .47+ .15 Primitive Defense .41* .54* .29 *Significant at <<105 level. +Approaches significance at <<110 level. 133 APPENDIX J Correlation Coefficients Between Future Time Extension, Individuation and Attachment Percentages and Ego Processes for Adolescents With Cystic Fibrosis. Adolescents with Cystic Fibrosis Males Females N=20 N=10 N=10 Incomplete Sentences Extension Correlated With: Summed Coping .05 .12' .06 Summed Defense .06 .23 -.15 Controlled Coping .18 .23 .24 Expressive Coping -.26 -.08 -.46+ Structured Defense -.13 -.17 -.08 Primitive Defense .12 -.06 .42 Events Test Extension Correlated With: Summed Coping .14 .08 .25 Summed Defense .03 -.27 .47+ Controlled Coping .24 .15 .37 Expressive Coping -.04 -.04 -.39 Structured Defense -.05 -.15 .13 Primitive Defense -.05 -.13 .06 Individuation Correlation With: Summed Coping .07 .14 -.18 Summed Defense .09 -.14 .34 Controlled Coping .06 .01 -.03 Expressive Coping .12 .12 -.11 Structured Defense -.05 -.10 -.08 Primitive Defense -.01 -.21 .31 Attachment Correlated With: Summed Coping -.18 -.55* .09 Summed Defense .08 .34 .04 Controlled Coping -.29 -.66* .13 Expressive Coping -.62* -.86* -.53* Structured Defense .24 .30 .26 Primitive Defense .08 .20 .02 *Significant at ‘(TDS level. +Approaches significance at.<:.10 level. 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