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The Effect of inflammatory bowel disease and growth retardation on the self-image of adolescents Marshall, Helga Adda 1987

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THE EFFECT OF INFLAMMATORY BOWEL DISEASE AND GROWTH RETARDATION ON THE SELF-IMAGE OF ADOLESCENTS By HELGA ADDA MARSHALL B.Sc.N., The University of Toronto,  1971  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE IN NURSING in THE FACULTY OF GRADUATE STUDIES (The School of Nursing)  We accept this thesis as conforming to the required  standard  THE UNIVERSITY OF BRITISH COLUMBIA September 1987 © Helga Adda Marshall,  1987  In  presenting  degree at  this  the  thesis in  University of  partial  fulfilment  of  British Columbia, I agree  freely available for reference and study. I further copying  of  department publication  this or of  thesis for by  his  or  her  representatives.  that the  for  an advanced  Library shall make  It  is  granted  by the  understood  that  this thesis for financial gain shall not be allowed without  k>\,£<;rrt&  The University of British Columbia 1956 Main Mall Vancouver, Canada V6T 1Y3 D a t e  requirements  ^ ^ ^ C e ^ 7, /9fr?-  it  agree that permission for extensive  scholarly purposes may be  permission.  Department of  the  head of copying  my or  my written  ii  ABSTRACT  The Effect of Inflammatory Bowel Disease and Growth Retardation on the Self-image of Adolescents  This study was undertaken to determine the effect of inflammatory bowel disease (IBD), in general, and one of its manifestations, growth retardation, in particular, on the self-image of adolescents.  The  conceptualization of adolescent self-image as described by D. Offer (1981) was the basis for the study's framework.  The psychological, social,  sexual, familial and coping selves, further classified into 11 separate content areas, comprised the adolescent self-image. A descriptive-comparative design was used to describe the self-image of adolescents with IBD and to compare the similarities and differences in self-image among the IBD adolescents with and without growth and their healthy peers.  retardation  A convenience sampling method was used to obtain  24 IBD subjects between the ages of 12 and 20, eleven of whom had growth retardation.  A normative sample of adolescents (N = 1385) was used by  permission of D. Offer for purposes of comparison with the IBD subjects. Data were gathered using the Offer Self-image Questionnaire for adolescents.  iii  The adolescents with IBD did not differ remarkably from the norm in their perceptions of self although a tendency among the females to have concerns about their body image and sexual maturation was demonstrated. The IBD subgroup without growth retardation reported self-image perceptions that were superior to the norm and the growth retarded subgroup in almost every category.  The IBD subgroup with growth retardation reported a  disturbed self-image in a number of areas.  The males revealed disturbances  primarily in body image and secondarily in emotional harmony, and adaptability to stress in the immediate environment, family relations, and sexual maturation.  The females revealed self-image disturbances in sexual  maturation and body image. The findings of the study suggest that growth retardation in the IBD adolescent may have a negative effect on self-image.  The findings may  demonstrate a more notable and broader effect of growth retardation on self-image in the males with IBD than in the females.  iv. TABLE OF CONTENTS Page Abstract  ii.  Table of Contents  iv.  List of Tables  ix.  List of Figures  xi.  Acknowledgements  xii. CHAPTER ONE Context of the Problem  Rationale for the Study Statement of the Problem Purposes Definition of Terms Assumptions Limitations Ethics and Human Rights Significance  1 1 4 4 4 6 6 7 8  CHAPTER TWO Review of the Relevant Literature Overview The Adolescent Self-image The Effect of Chronic Physical Illness On Adolescent Self-image The Effect of Growth Retardation and/or DDSSC in Adolescents on Self-image Summary Conceptual Framework  10 10 10 14 19 21 22  CHAPTER THREE Methodology Research Design Sample and Setting Selection Criteria Data Collection Procedures Instrument for Data Collection  25 25 26 26 27 28  Page Scoring Reliability Internal Consistency Stability Interrater Reliability Validity Predictive Validity Concurrent Validity  29 30 30 31 31 31 31 32  Data Analysis  32 CHAPTER FOUR Results and Discussion  37  Overview Limiting Factors Influencing Interpretation of Findings Description of the Sample The Self-image of Adolescents with IBD  37  Perception of the Psychological Self  44  Impulse Control Emotional Tone Body and Self Image Perception of the Social Self Social Relationships Morals Vocational and Educational Goals Perception of the Sexual Self Sexual Attitudes Perception of the Familial Self Family Relationships  39 41 44  44 45 47 50 50 52 53 55 55 57 57  vi. Page Perception of the Coping Self Mastery of the External World Psychopathology Superior Adjustment Additional Analysis  59 59 60 61 62  Summary  63  Similiarities and Differences in Self-image Among the IBD Adolescents with and without Growth Retardation and Their Healthy Peers  65  Perception of the Psychological Self Impulse Control Emotional Tone Body and Self Image  67 67 68 70  Perception of the Social Self Social Relationships Morals Vocational and Educational Goals Perception of the Sexual Self Sexual Attitudes  73 73 74 76 78 78  Perception of the Familial Self Family Relationships  81 81  Perception of the Coping Self Mastery of the External World Psychopathology Superior Adjustment Summary  83 83 85 86 87  CHAPTER FIVE Summary, Conclusions and Recommendations  93  Summary and Conclusions  93  Recommendations for Practice  98  vii. Paoe Recommendations for Research References  101 104  List of Appendixes A Appendixes  108  Internal Consistency of Each OSIQ Subscale Score for Four Separate Normal Populations  108  Percent Endorsements of Selected Items for Emotional Tone for Study Groups by Gender  109  Percent Endorsements of Body and Self Image for Percent Endorsements of a) Social Relationships  110  Selected Items for Study Groups by Gender Selected Items for and b) Vocational and  Educational Goals for Study Groups by Gender  111  Percent Endorsements of Selected Items for Sexual Attitudes for Study Groups by Gender Percent Endorsements of Selected Items for Family Relationships for Study Groups by Gender Percent Endorsements of Selected Items for a) Mastery of the External World and b) Psychopathology for Study Groups by Gender B Appendixes  112 114 115 116  Letter of Explanation to the Hospital  116  Letter to the Family Physician  117  Letter of Explanation to the Gastroenterologist  118  Gastroenterologist's Consent  119  Explanation to Parent of Adolescent with IBD  120  vi i i . Page Parental Consent - Adolescent with IBD  121  Letter of Explanation to Adolescent with IBD  122  Adolescent Consent - Adolescent with IBD  123  C Appendixes  124  Demographic Data  124  The Offer Self-image Questionnaire  125  D Appendixes  132  British Columbia Children's Hospital Letter of Consent to Proceed with the Study  132  Consents to Proceed Given by Two Physicians, Health Records and the Nursing Department of the British Columbia Children's Hospital  133  Gastroenterologist's  Consent 1  136  Gastroenterologist's Consent 2  137  Letter of Consent for the Use of the OSIQ for Adolescents  138  E Appendixes  139  Figure 1  139  Figure 2  140  IX.  LIST OF TABLES Table  Page  1  Distribution of Older and Younger Males and Females with IBD by Groups  35  2  Distribution of Gender, IBD Classifications and Incidence of Growth Retardation, Bowel Surgery and Ileostomy/Col ostomy in the IBD Sample  40  3  Selected Characteristics of the IBD Sample  43  4  Normative and IBD Samples' Standard Score Means for Impulse Control  45  5  Normative and IBD Samples' Standard Score Means for Emotional Tone  46  6  Normative and IBD Samples' Standard Score Means for Body and Self Image  48  7  Normative and IBD Samples' Standard Score Means for Social Relationships  51  8  Normative and IBD Samples' Standard Score Means for Morals  52  9  Normative and IBD Samples' Standard Score Means for Vocational and Educational Goals  54  10  Normative and IBD Samples' Standard Score Means for Sexual Attitudes  55  11  Normative and IBD Samples' Standard Score Means for Family Relationships  58  12  Normative and IBD Samples' Standard Score Means for Mastery of the External World  60  13  Normative and IBD Samples' Standard Score Means for Psychopathology  61  14  Normative and IBD Samples' Standard Score Means for Superior Adjustment  62  15  Normative Sample's and IBD Subgroups' Standard Score Means for Impulse Control by Gender  67  Table 16  Normative Sample's and IBD Subgroups' Standard Score Means for Emotional Tone by Gender  17  Normative Sample's and IBD Subgroups' Standard Score Means for Body and Self Image by Gender  18  Normative Sample's and IBD Subgroups' Standard Score Means for Social Relationships by Gender  19  Normative Sample's and IBD Subgroups' Standard Score Means for Morals by Gender  20  Normative Sample's and IBD Subgroups' Standard Score Means for Vocational and Educational Goals by Gender  21  Normative Sample's and IBD Subgroups' Standard Score Means for Sexual Attitudes by Gender  22  Normative Sample's and IBD Subgroups' Standard Score Means for Family Relationships by Gender  23  Normative Sample's and IBD Subgroups' Standard Score Means for Mastery of the External World by Gender  24  Normative Sample's and IBD Subgroups' Standard Score Means for Psychopathology by Gender  25  Normative Sample's and IBD Subgroups' Standard Score Means for Superior Adjustment by Gender  LIST OF FIGURES gure The IBD Sample's (N = 24) Standard Score Means for OSIQ Subscales in Comparison to Offer et a l . ' s (1981a) Normative Sampl The a) IBD Sample's, b) IBD without GR Subgroup's and c) IBD with GR Subgroup's Standard Score Means for the OSIQ Subscal in Comparison to Offer et a l . ' s (1981a) Normative Sample.  xii.  ACKNOWLEDGEMENTS  I extend my sincere appreciation to my thesis committee, Roberta Hewat, chairman, and Barbara Milne for their unlimited patience, guidance, support and commitment during the evolvement of this study. As well, I wish to thank Anne Crozier and Drs. A. George Davidson and Eric Hassall for their interest in the study and contributions towards making the research possible. Importantly, I express my gratitude to the adolescents (and their families) who agreed to participate in the study for the interest, time and effort taken in the sharing of their feelings and thoughts about themselves. I would also like to thank Michele and Ian Thomas for their processing talents and their constant accessibility and r e l i a b i l i t y . Finally, I must thank my husband, family and friends for their limitless interest i n , and encouragement, understanding and support of this project.  1 CHAPTER ONE  Context of the Problem  Rationale for the Study  Inflammatory bowel disease (IBD)  is a chronic condition of unknown  etiology that influences the physical and psychological well-being of those who contract the disease.  IBD can have devastating effects for  some children who develop growth retardation and/or delayed development of secondary sexual characteristics (DDSSC) as manifestations of IBD. As these children reach the maturational stage of adolescence, having to live with a chronic illness and the presence of delayed physical and/or sexual development may have a significant effect on their perceptions of themselves.  Therefore, the investigator has undertaken this study to  determine the effect primarily of IBD and growth retardation on the self-image of adolescents. Offer, Ostrov and Howard define the self as the sum total of perceptions, thoughts, and feelings held by a person in reference to himself (1981a, p. 24).  The self-image has been described as a  self-portrait, the person one sees, thinks and feels oneself to be (Offer et a l . , 1981a, p. 12, 14, 32,  129).  Adolescence is considered a critical l i f e period with respect to the development of the self (Offer et a l . , 1981a, p. 24).  The formation  2 of the adolescent's self-image is significantly influenced by the dramatic biopsychosocial changes characteristic of this developmental l i f e period.  Adolescents are faced with achieving the often d i f f i c u l t  developmental tasks expected of them during this period (Felice & Friedman, 1982; Havighurst, 1974; Houk, 1980; Offer et a l . , 1981a; Strax & Wolfson, 1984).  Biopsychosocial changes and the success or failure in  achieving the adolescent developmental tasks help to determine the self-image of the adolescent.  However, the investigator was primarily  interested in examining how adolescents experiencing an additional factor in their lives, namely chronic i l l n e s s , see, think and feel about themselves.  It is believed that these self-perceptions are indicators  of the level of the adolescent's psychological adjustment (Offer et a l . , 1981a). Body image, how an individual perceives his or her body, is one component of the overall self-image (Offer et a l . , 1981a).  Perceptions  of body image can lead to specific psychosocial problems in the chronically i l l adolescent (Leichtman & Friedman, 1975).  Therefore, the  investigator was also interested in examining the effect of specific factors affecting body image such as growth retardation, on the overall self-image of the chronically i l l adolescent. Inflammatory bowel disease (IBD), which designates the conditions ulcerative c o l i t i s and Crohn's disease, is recognized as a major cause of chronic intestinal disease among adolescents in North America and other Western cultures (Johnson, Hughes, McDermott, Polglase & Pi h i ,  3 1982; Rankin, 1981; Sparacino, 1984).  Davidson (1984) believes that a  f i f t h to a third of all IBD patients range in age from 0 - 1 8  years and  that up to 8 new cases of IBD per 100,000 people are diagnosed yearly in British Columbia. not available.  Specific IBD incidence figures for adolescents are  Based on the literature and the investigator's clinical  experience, a notable number of adolescents with IBD experience ongoing remissions and exacerbations, debilitating symptoms, multiple hospitalizations and/or surgeries.  Consequently, these adolescents must  cope with not only the normal biopsychosocial changes associated with this maturational  l i f e stage, but also with the recurrent disruptions in  l i f e s t y l e , in peer and family relationships and in education and career development. Growth retardation and/or delayed development of secondary sexual characteristics (DDSSC) are specific manifestations of childhood onset IBD, experienced by a considerable number of these adolescents (Fonkalsrud, 1981; Grand, 1980; Oryboski & Hillemeier, 1980; Rosenthal, Snyder, Hendricks & Walker, 1983).  These developments may potentially  lead to unsatisfactory body image perceptions among individuals within this population. The disease process of IBD conceivably can cause extensive disruptions in the daily l i f e of an individual.  Living with this  disease and some of its specific disease-related manifestations, such as growth retardation, may have a significant effect on the self-image and therefore the level of psychological adjustment of these adolescents.  4 Statement of the Problem The characteristics of the disease processes of IBD in adolescents may result in significant disruptions in l i f e s t y l e , social and family relationships and in education and career development that may affect individuals' perceptions of self-image.  Concerns about body image may  be even greater among IBD adolescents who also have growth a manifestation of IBD.  retardation,  These postulations led the investigator to  question the effect of IBD and growth retardation on the self-image of adolescents. Purposes The purposes of this study were: 1.  to describe the self-image of adolescents with IBD;  2.  to compare the self-image of adolescents with IBD to  normative self-image values of their healthy peers; and 3.  to compare the self-image of adolescents with IBD who  have growth retardation and/or DDSSC to: a)  self-image values of their peers with IBD who do not have growth retardation and/or DDSSC;  b)  normative self-image values of their healthy peers. Definition of Terms  Self-image:  the sum total of perceptions, thoughts and feelings held by  a person in reference to him/herself.  The total self was  represented by the psychological, familial, social, sexual and coping selves (Offer et a l . , 1981a, p. 24).  Self-image was  5 measured by the Offer Self-image Questionnaire for adolescents (OSIQ - Appendix C). Adolescent:  a person between the ages of 12 and 20.  Inflammatory Bowel Disease:  a term designating both Crohn's disease and  ulcerative c o l i t i s . Normative Adolescent Sample:  Offer et a l . ' s (1981a) random sample of  adolescents from the Chicago, Minnesota and Vermont areas with no known physical or mental illnesses studied in the late 1970s.  The  adolescents were primarily lower middle-class to upper middle-class urban, suburban and rural youths. Growth Retardation:  measures of height and/or bone age considered to  indicate significantly lower than normal growth for age, that i s , a height measure equal to or less than the tenth (10th) percentile for age according to the standardized height charts used by the physicians at B. C. Children's Hospital, and a bone age (Greulich & Pyle, 1959) which is at least one or more years younger than the subject's chronological age. Delayed Development of Secondary Sexual Characteristics:  failure to  achieve the appropriate pubertal stage for age group according to J.M. Tanner's stages of growth in adolescence (Tanner, 1955). These data were required to be explicitly indicated in the physician's notes on the patient's chart.  If there was no recent  notation of DDSSC on the subject's medical record, the presence of DDSSC in the subject at the time of the study required verification by the physician at the B.C. Children's Hospital for this data to be incorporated into the study.  6 Assumptions 1.  Adolescence is a critical period with respect to the development of the self.  How one sees, thinks and feels  oneself to be, that i s , one's self-image, is considered to be a major determinant and valid indicator of one's psychological adjustment. 2.  The self-image is multidimensional.  The adolescent may master  one aspect of his psychological world while failing to adjust in another, therefore, it is necessary to evaluate functioning in multiple areas. 3.  Adolescents are sufficiently psychologically aware and sensitive to provide valid self-portraits.  Empirical work with  the OSIQ has supported "that what normal adolescents consciously know and report about themselves is much more salient than what they are motivated not to know or report . . . . it is not (a conclusion that is) required by a theory of self" (Offer et a l . , 1981a, p. 25; Offer, Ostrov, & Howard, 1984b). Limitations 1.  Wylie (1974) discussed the multidimensional nature of the self-concept.  The use of a structured self-image questionnaire  approach to the study of self-image forced subjects to respond to a given set of items and no others. weighted according to an a priori scale.  These items were In theory, the  structured test format could have omitted items that were, for  7 any given respondent, the most meaningful aspects of his or her self-image. 2.  The findings generated by the study were limited in terms of generalizability due to the potentially small sample of adolescents with IBD available and the non-random sampling method used to select study participants.  As a result, certain  confounding factors were not controlled for in the study.  The  participants in the IBD sample were not equally distributed for age, gender, type of IBD, presence of ileostomy/colostomy, past history of bowel surgery and severity of illness at the time of participation in the study.  Therefore, the IBD subgroups were  not matched for the confounding factors listed above. Ethics and Human Rights The subjects' rights were protected by: 1.  requests for permission to conduct the study from the appropriate authorities of the hospital in question, the attending physicians of the subjects with IBD, the family physicians of the subjects,the parents of the subjects, where applicable, and the subjects themselves, in the form of explanatory letters and/or consent forms outlining the purpose, benefits and risks of the study (Appendix B)  2.  the procedure used for obtaining names of potential research subjects from the clinical nurse specialist in the department of gastroenterology at the B.C. Children's Hospital.  This  8  individual was given permission by the subjects and/or physicians to release names, addresses and phone numbers to the researcher 3.  the coding and classifying of data generated by the questionnaires according to the responses, only, and by the withholding of actual names of subjects  4.  the destruction of the questionnaires once the data had been analyzed  5.  the procedure that was followed in informing the subjects that they may ask any questions regarding the study or questionnaire and may refuse to answer questions and continue to participate in the study.  They were also informed that they may withdraw  from the study at any time without it affecting their present or future health care. Significance A notable number of adolescents with IBD experience the ongoing remissions and exacerbations, debilitating symptoms, multiple hospitalizations and/or surgeries often characteristic of IBD conditions.  The disruptions caused by these experiences may  considerably affect how these adolescents see, think and feel about themselves - their self-image.  Self-image is considered a major  determinant of the psychological adjustment of the individual. It is important for nurses and other professionals as well as family members, who are in regular and/or daily contact with these  9  adolescents, to understand how they see, think and feel about themselves.  It is believed that this study's findings will enrich their  knowledge and understanding of this adolescent population.  Hospital and  community health nurses, social workers, physicians, psychologists, parents, teachers, hospital tutors and counsellors may all utilize this new found knowledge and insight to know, importantly, i f , when and where to gear their health teaching, counselling, support and encouragement or simply their empathy.  10 CHAPTER TWO  Review of the Relevant Literature  Overview The examination and analysis of the theoretical literature and past research included literature related to:  adolescent self-image, the  effect of chronic physical illness on adolescent self-image and the effect of growth retardation and/or delayed development of secondary sexual characteristics (DDSSC) in adolescents on self-image.  The  literature search also included theoretical writings and research related to the conceptualization of adolescent self-image based on the work of Daniel Offer (1969), Daniel Offer and Kenneth I. and Daniel Offer, Eric Ostrov and Kenneth I.  Howard (1972)  Howard (1981a, 1982a,  1984a). The Adolescent Self-image Adolescence is a maturational l i f e period characterized by relatively rapid and dramatic physical, psychological and social growth and development (Felice & Friedman, 1982; Offer et a l . , 1981a).  It is a  c r i t i c a l period with respect to the development of the self-image, "the sum total of perceptions, thoughts and feelings held by a person in reference to himself" (Offer et a l . , 1981a, p. 24).  Success or failure  in adjusting to the biopsychosocial changes characteristic of adolescence is believed to influence the adolescent's self-image (Houk, 1980).  The self-image is considered to be one of the main determinants  11 of an individual's behavior and level of adjustment and in particular a determinant of an adolescent's level of psychological adjustment to his or her world (Offer, Ostrov & Howard, 1981b; Sparacino, 1984). The terms self-image and self-concept are used interchangeably in the literature.  The self-concept is considered to be a multidimensional  concept (Wylie, 1974).  For this reason, researchers have examined the  self-image or self-concept from their own particular perspectives, commonly exploring only selected dimensions of this concept (Dusek & Flaherty, 1981; Newman & Newman, 1979). In 1968, Simmons, Rosenberg and Rosenberg (1973) investigated the self-image of 1,917 American children from grades 3 to 12.  The sample  was 63% Negro and more predominantly working class than the national average.  The dimensions of the phenomenal self (the individual as known  to the individual) measured were self-consciousness, stability, self-esteem and "perceived self".  Indices were developed by the authors  to measure the four aspects of the self-image noted and were presented in their appendix.  Self-consciousness was measured by a seven-item  Guttman Scale and stability of self by a five-item Guttman Scale, examples of which are presented in their article.  Global and specific  indices were designed to measure general self-esteem, and examples of the indices used were provided in their publication of the study.  The  "perceived self" was measured by the investigators asking their subjects what they believed selected individuals thought of them.  The findings  demonstrated that the younger adolescents (ages 12-14) when compared to  12 the 8-11 year olds, exhibited increased self-consciousness, greater instability of self-image, somewhat lower self-esteem, lower opinions of themselves with respect to the attributes they valued and a lessened conviction that peers of the same sex, parents and teachers held commendatory opinions of them.  The investigators also found that the  extent of "disturbance" in self-image evident among the younger adolescents was not evident in the older adolescent group.  According to  the authors of this study the term disturbance in self-image was not meant to imply psychopathology but to indicate a mild distress state. In the 1960s, the late 1970s and 1980, Offer, either working alone or with Ostrov and/or Howard, developed and used the Offer Self-image Questionnaire (OSIQ) for adolescents to gather "information about the phenomenal self of teenagers", that i s , the adolescents' subjective perceptions, thoughts and feelings about themselves (Offer et a l . , 1981a, p. 31).  The OSIQ assesses 11 separate content areas of the  adolescent self-image represented by the following 11 subscales: impulse control, emotional tone, body and self image, social relationships, morals, vocational and educational goals, sexual attitudes,  family  relationships, mastery of the external world, psychopathology and superior adjustment (Offer et a l . , 1982a). Offer, Ostrov and Howard, studied "normal" teenagers, normal referring to the "attitudes and self-conceptions of a random group of adolescents, not necessarily to psychological health", as well as "deviant" teenage populations (e.g. the physically, emotionally, and  13 mentally i l l , the gifted, the delinquent)  (1981a, p. 35).  Data  collected from the "normal" teens studied in the late 1970s (N=1385), a predominantly middle-class, urban, suburban and rural group, served as the investigators' standardized normative data for all the groups studied (Offer et a l . , 1981a, p. 33-35). Overall data for the "normal" groups investigated from 1960 to 1980 revealed that the vast majority of these adolescents, though they came from different cultural and racial backgrounds and time periods, did not perceive themselves as characteristically existing in a state of turmoil during this maturational period.  They saw themselves as adapting to  their rapid physical development and emerging sexuality without great conflict, as enjoying good interpersonal relationships with friends and family and as accepting the values of and functioning well within their societies (Offer et a l . , 1981a, p. 116).  Age differences among the  samples did not reveal differences in self-image, but gender differences did.  The data demonstrated that girls "felt worse about their bodies,  less open to sexual feelings, and less confident about vocational aspirations" than did boys (Offer et a l . , 1981a, p. 117).  With respect  to morality and a f f i l i a t i o n , the girls exhibited more positive attitudes than the boys.  These findings were attributed to the influence of  Western society's traditional  sex roles.  This normal sample of teens  also commonly exhibited a "situation-specific anxiety" that the investigators felt was easily handled by the adolescents (Offer et a l . , 1981a, p.  117).  14 Dusek and Flaherty (1981) conducted a three year longitudinal study with students in grades 5 to 12. in the study were not provided.  Numbers of subjects that participated The students were asked to rate  themselves on the concept "my characteristic self" (myself as I most often feel about myself). this concept.  Twenty-one bipolar adjective pairs comprised  Analysis of data revealed that the adolescent  self-concept developed in a continuous and stable way.  Data also  revealed that there were differences in self-concept according to gender, consistent with stereotypical gender roles.  In addition,  according to their data, the investigators contended that adolescence is not commonly a period of storm and stress, identity c r i s i s , and disruption or significant alteration in self-concept (1981, p. 33). The Effect of Chronic Physical Illness On Adolescent Self-image It has been suggested that the nature of chronic illness during the period of adolescence can effect psychological changes and/or stresses such as altered self-concept and body image, anxiety, uncertainty about future goals, dependency and doubts about future self-sufficiency and doubts about the ability to assume the role of parent (Houk, 1980; Kellerman, Zeltzer, Ellenberg, Dash & Rigler, 1980; Sparacino, 1984). These changes, stresses and/or limitations are therefore believed to have the potential to threaten, disrupt or prevent the accomplishment of adolescent developmental tasks thought to be essential for healthy psychological adjustment (Brown, 1982; Leichtman & Friedman, 1975; Sparacino, 1984).  In addition, success or failure in accomplishing the  15 developmental tasks is believed to affect the self-image. The self-image is considered a major determinant of the level of psychological adjustment (Offer et a l . , 1981a). A significant correlation has been found between the self-image and adolescent mental health and adjustment, physical health, personality development, family relations, coping a b i l i l t i e s , interpersonal relationships and mood (Offer et a l . , 1981a).  Nelson also suggests that  chronic illness and the dependence it often creates may "severely delay or compromise the process of self-image development in the adolescent" (1984, p. 4). Pless and Roghmann (1971) examined three previously conducted epidemiologic surveys of children aged 18 years and under (N=913) with mildly to moderately disabling chronic illnesses (asthma, epilepsy and cerebral palsy).  The surveys were conducted in the U.K. and U.S.A. in  1958, 1964 and 1970.  Though the impact of chronic illness specifically  on the self-image was not examined in the surveys, the examination of the surveys revealed an excess rate of "psychosocial handicaps" in the areas of educational achievement, behavior and psychologic adjustment among the children with chronic illnesses (p. 355).  Pless and Roghmann  suggest that these findings likely were more attributable to the chronic illness than to any other variables.  Pless (1984) later reviewed other  studies examining the physical and psychological functioning of chronically i l l children and adolescents.  This review revealed that  most of these studies concluded that individuals with chronic physical  16 disorders have an increased risk of experiencing a significant psychological or social problem during childhood when compared with their healthy peers. Tavormina, Kastner, Slater and Watt (1976) assessed the psychosocial functioning levels of a number of chronically i l l  children  (N=144) ranging from 5 to 19 years of age and having diabetes, asthma, cystic fibrosis or hearing impairment.  Several instruments were used  for the assessment, one of them being the Piers-Harris Self-Concept Scale.  The children's "self-attitudes" regarding intellectual and  school status, behavior, physical attributes and appearance, popularity, anxiety, and satisfaction and happiness, were rated (1976, p. 102).  The  sample, with the exception of the hearing-impaired children, scored significantly higher than the standardized normative group for the total self-concept score.  Though the individuals in the sample were  considered to be "realistically different" than normals, the investigators believed that the overall results of the study demonstrated the normality rather than the deviance and demonstrated the strength and coping abilities rather than the weaknesses of these children (1976, p. 109). Kellerman et a l . (1980) conducted the f i r s t large scale study of the psychological effects of physical illness specifically in the adolescent population, although multiple dimensions of the self-image were not assessed.  The investigators compared 349 healthy adolescents  with 168 adolescents (mean age 15.2) who had various chronic or serious  17 illnesses (leukemia, solid malignant tumors, cardiologic, nephrologic and rheumatologic disorders, diabetes and cystic fibrosis).  The groups  were compared on standardized measures of trait anxiety, self-esteem and perception of self-control over health and illness.  They found that  this sample of adolescents was comparatively psychologically normal in terms of the self-esteem and trait anxiety measures used.  The  adolescents' attitudes regarding control over their health and illness were assessed as reflecting realistic perceptions on their part.  The  investigators concluded that chronic illness in the adolescent does not inevitably lead to psychopathology. Zeltzer, Kellerman, Ellenberg, Dash and Rigler (1980) compared healthy and chronically physically i l l adolescents' perceptions of the influence of illness on body image, autonomy, relations with peers, family interaction, sexuality, future orientation and education, using the same sample as did Kellerman et a l . (1980).  The researchers  designed an illness-impact questionnaire addressing specific health concerns of adolescents in relation to the aforementioned developmental issues studied.  The healthy and chronically i l l adolescents agreed that  the restriction of freedom was the major disruption in their lives effected by i l l n e s s , followed by disruption in relations with peers, siblings and parents.  The findings suggested that the chronically i l l  adolescents investigated were essentially psychologically healthy and supported the resiliency and coping s k i l l s of these adolescents.  18 Studies investigating the relationship directly between the multidimensional self-image of adolescents and chronic or serious physical illness are sparse.  A study conducted by Crozier (1982)  compared primarily the body images of healthy adolescents, adolescents with ulcerative c o l i t i s and adolescents with ileostomies who had had ulcerative c o l i t i s .  There were twenty subjects in each group between  the ages of 12 and 20.  The Secord and Jourard's Body and Self Cathexis  questionnaire used in this study did not reveal differences among the groups' perceptions of their body images.  On the other hand,  qualitative data obtained from personal interviews indicated that the impact of ulcerative c o l i t i s on body image was both positive and negative.  Subjects who had ileostomies were found to be equivalent to  their healthy peers in every way except for a lesser involvement in certain extracurricular and social activities such as sports and dating.  In addition, these adolescents demonstrated a healthier sense  of body image than those with ulcerative c o l i t i s who did not have surgery.  Whether this finding among those who had not had the surgery  is attributable to an aspect of the treatment such as corticosteroid therapy, to the course of the disease i t s e l f or to other determinants is not known. Offer et a l . (1984a) examined formerly researched studies investigating the self-images of groups of physically i l l adolescents with asthma, leukemia, Hodgkin's disease and cystic fibrosis.  They  compared the self-images of these adolescents with their own normative  19 data.  The results indicated that the asthmatic and cancer groups had  comparatively normal self-images whereas those with cystic fibrosis exhibited disturbed self-images.  The authors claim that if these  adolescents were disturbed it was not likely because of the physical illness but was in addition to the i l l n e s s .  They speculate that if  there was a social stigma attached to a particular physical illness and the stigma was visible, the self-image would be impaired.  They suggest  that the more visible the stigma, the greater would be the impairment of self-image. The Effect of Growth Retardation and/or DDSSC in Adolescents On Self-image It has been suggested that no upset during puberty is of greater personal importance or disturbance to the adolescent than for him or her to continue to be abnormally short in stature and/or delayed in the development of secondary sexual characteristics while his or her peers are growing and developing at normal rates.  These adolescents commonly  experience anxiety and depression as a result of delays in growth and development and damage to the self-image as a consequence of these delays is implied (Barnes, 1975). A significant number of adolescents with IBD exhibit at least some degree of growth retardation and/or DDSSC.  Fifteen to 30% of  adolescents and children with Crohn's disease and 5 to 10% of those with ulcerative c o l i t i s are below the third percentile in height for their age (Rosenthal, et a l . , 1983).  Separate figures for adolescents are not  20 available.  It  is believed that short stature and/or DDSSC may result in  serious problems in the achievement of developmental tasks and therefore with self-image development and normal psychological development in the adolescent (Daniel, 1975; Rankin, 1981; Rosenthal, et a l . , 1983).  No  studies have been found in the literature investigating overall or specific aspects of self-image of adolescents with IBD, with or without growth retardation and/or DDSSC. Landon, Rosenfeld, Northcraft and Lewiston (1980) administered the OSIQ to three groups of adolescents with mean height less than the f i f t h percentile for age:  cystic fibrosis (CF) males aged 12-19 (N=16), CF  females aged 12-19 (N=8) and otherwise healthy males with short stature and/or delayed puberty aged 13-19 (N=34).  The otherwise healthy males  with short stature were the control group used to study the effects of CF on the psychological adjustment of the adolescents with CF. The findings of Landon et a l . ' s (1980) study were also compared to published normative data and to data from adolescents being treated for emotional disorders.  The otherwise healthy teenagers with short stature  and/or DDSSC reported a high frequency of scholastic, social and emotional disturbances.  The results revealed that the CF males reported  self-images that were as disturbed as a) the pubertally delayed but otherwise healthy males' and b) the emotionally disturbed sample's self-images.  The female CF group reported self-images that were  equivalent to the normative sample's.  The investigators interpreted the  findings to suggest that the self-image disturbance of the CF males may  21 be more related to the stigma of short stature and/or DDSSC, a stigma more easily disguised in the female, than to the presence of CF. Summary The literature related to adolescence emphasized the importance of the development of a positive self-image during this maturational stage.  life  Investigators, who have examined the self-images of "normal"  child and teenage samples and the effects of chronic physical illness on the self-images of children and adolescents, have commonly explored only selected dimensions of the multidimensional nature of the concept of self-image.  Offer et a l . (1981a) examined the self-images of a large  number of normal adolescents and smaller numbers of physically i l l adolescents, using 11 separate content areas representing the adolescent s e l f , to measure the self-image in a comprehensive manner.  Most authors  or researchers theorized or found that adolescence was not a period in which the individual commonly experienced disruption or significant alteration in the self-image but that self-image developed in a continuous and stable way.  Other authors theorized that chronic illness  and the dependence it often creates may negatively affect the development of self-image in the adolescent.  Some researchers found a  significant correlation between the self-image and adolescent physical and mental health and achievement of the developmental tasks expected of adolescents.  Yet, other researchers discovered that adolescents with  chronic or serious illnesses reported normal self-images and possessed  22 strengths and positive coping abilities in the face of living with chronic illness. Some theorists speculate that growth retardation and/or DDSSC in adolescents may result in serious difficulties in their expected achievement of developmental tasks thereby potentially negatively affecting their self-images.  Some researchers indicate that their  findings suggest that growth retardation and/or DDSSC in the healthy and chronically i l l adolescent may lead to self-image disturbances.  The  study of IBD adolescent patients, who do or do not have growth retardation and/or DDSSC, were not included in the self-image studies searched by the investigator for review of the relevant  literature.  Therefore, the investigator was interested in determining a) the effect of IBD, in general, on the self-image of adolescents and b) the effect of growth retardation and/or DDSSC, specifically, on the self-image of adolescents with IBD. Conceptual Framework The conceptualization of self-image as used in this study is based on the work of Offer (1969), Offer and Howard (1972) and Offer et a l . (1981a, 1982a).  It is based on their theory of the "self" and on  general theory of the psychological and social development of adolescents (Offer et a l . , 1981a, p. 11-29). Offer et a l . (1981a, 1982a) are interested in studying only the phenomenal self of the adolescent, that i s , the self as the adolescent subjectively experiences and perceives him/herself to be.  The authors'  23 concept of self, adopted by this investigator, is derived from a combination of cognitive and psychodynamic approaches to the theory of self (Offer et a l . , 1981a, p. 23-24).  The authors consider the self to  be more than an individual's cognitive representations of him/herself to him/herself because they believe it also includes feelings and wishes that are unconscious.  Therefore, they describe the self as "the sum  total of perceptions, thoughts and feelings a person has in reference to himself" (Offer et a l . , 1981a, p. 24). On the basis of theory, clinical experience and a review of empirical findings, Offer (1969) and Offer et a l . (1981a; 1982a, p. 1) have devised a self-report questionnaire that consists of 11 separate content areas representing the adolescent self-image called subscales: impulse control, emotional tone, body and self image, social relationships, morals, sexual attitudes, family relationships, mastery of the external world, vocational and educational goals, psychopathology and superior adjustment.  Each subscale corresponds to an area of  functioning considered important to the psychological world of the adolescent.  The 11 subscales have been classified as 5 major aspects of  the adolescent's self-system: the psychological self, the social self, the family self, the sexual self and the coping self (Offer et a l . , 1982a, p. 1).  Together the 5 major aspects of the adolescent self  represent the phenomenal self of the adolescent as it is defined by Offer et a l . (1981a).  24 The conceptualization of the self, and self-image and its measurement as presented by Offer (1969), Offer and Howard (1972) and Offer et a l . (1981a; 1982a) portrays a comprehensive perspective that was relevant to this study of adolescent self-image.  The concepts of  measurement of phenomenal self of the adolescent in 11 content areas representing the self-image and use of the self-report method to derive the data f u l f i l l e d the investigator's requirements for the study of the effects of IBD and growth retardation on the self-image of adolescents.  25  CHAPTER THREE  Methodology  Research Design  A descriptive-comparative design was used to identify the subjective self-perceptions of adolescents who have IBD and have or do not have growth retardation and/or DDSSC.  This same research design was  also employed to compare self-image data generated by the aforementioned two groups and to compare this information with normative data.  The  study's primary independent variables were inflammatory bowel disease (presence or absence) and growth retardation and/or delayed development of secondary sexual characteristics (presence or absence).  In addition,  demographic information, such as the adolescent's sex, age, presence or absence of previous bowel surgery and existing ileostomy or colostomy, was collected.  The dependent variables were the 11 subscales within the  Offer Self-image Questionnaire (QSIQ) depicting 11 separate content areas of the adolescent self-image. The participants' responses to the questions specific to each of the 11 subscales comprising the questionnaire were compared with normative data derived from the "normal" population of adolescents studied by Offer et a l . (1981a).  Subscale profiles of IBD  26 adolescents who have and do not have growth retardation and/or DDSSC were also compared. Sample and Setting Potential candidates for this study were all adolescents with IBD (approximately 70-80) who were currently patients of two gastroenterologies and who attended the gastroenterolgy c l i n i c at the British Columbia Children's Hospital.  The l i s t s of the physicians'  patients were supplied to the investigator for selection of subjects by Anne Crozier, the clinical nurse specialist in the department, after permission was provided by the physicians.  Family physicians of the  potential candidates were contacted by mail prior to final selection of study participants to rule out unknown contradictions for selection (see Appendix B).  Approximately a third of the potential study participants  were not selected by the investigator because they failed to meet the age or capacity to respond to the questionnaire selection c r i t e r i a .  The  final number of IBD adolescents that participated in the study was 24, 11 of whom had growth retardation.  The healthy peer groups of  adolescents studied by Offer et a l . in the late 1970s (N = 1385) supplied the normative data required for comparisons of the chronically i l l and the healthy groups (1981a; 1982a).  The study participants  answered the questionnaires, mailed to them, in their homes. Selection Criteria The adolescents with IBD selected for this study met the following criteria.  They:  27 1.  either had or did not have growth retardation and/or DDSSC  2.  were persons between the ages of 12 and 20  3.  were able to read and understand English  4.  were physically and mentally able to respond to the questionnaire Data Collection Procedures  The investigator i n i t i a l l y contacted the potential subjects and their parents by explanatory letters mailed together with the study questionnaire (see Appendix B and C) and adolescent and parental consent forms (applicable i f the child was under sixteen years of age - see Appendix B).  The explanatory letter mailed to the potential study  participants provided them with the investigator's telephone number so that they were aware she was available to answer any questions they may have had about the study or questionnaire.  The letter also informed the  subjects that approximately 40 minutes would be required to complete the questionnaire.  They were asked to respond to the questions in terms of  their own thoughts and feelings about themselves, in privacy i f possible, and to return the questionnaire in the self-addressed, stamped envelope supplied.  The initial contact of subjects by mail was followed  by a phone call three weeks thereafter to ascertain that questionnaires had been received and to answer any questions the subjects or parents may have had.  The phone call was followed by postcards three to four  weeks later as reminders to those subjects who had expressed an interest  28 in participating in the study but had not yet completed the questionnaire at the time of telephone contact. Demographic data, supplementary to the information supplied in the brief demographic section attached to the questionnaire, were obtained from the participants' medical charts.  The charts were supplied by the  medical records department of the British Columbia Children's Hospital after permission to conduct the study was granted in writing by the In-Hospital Research Review Committee (see Appendix D). Instrument for Data Collection The instrument used to collect data about the self-image of adolescents with IBD was the OSIQ for adolescents, a self-report questionnaire developed by Offer et a l . (1982a).  It included a brief  demographic section and 130 items that were used to measure adjustment in 11 content areas depicting the adolescent self-image.  The 11 content  areas were represented by the questionnaire's 11 subscales:  impulse  control, emotional tone, body and self image, social relationships, morals, vocational and educational goals, sexual attitudes,  familial  relationships, mastery of the external world, psychopathology and superior adjustment.  The 11 subscales were further classified into five  separate aspects of the adolescent self-system representing the psychological self, social self, familial self, sexual self and coping self (Offer et a l . , 1981a, p. 39).  The 11 subscales also indirectly  represented the developmental tasks of adolescence.  29 Since 1962 the OSIQ has been used in several studies and administered to over 20,000 adolescents around the world (Offer et a l . , 1984a).  Questionnaire items have been added, revised or removed,  continuously.  The questionnaire has been shown to meaningfully  discriminate between younger (ages 13-15) and older (ages 16-19) teenagers as well as between males and females (Offer et a l . , 1981a). Scoring A Likert-type scale is used for scoring six alternative responses to each questionnaire item in the OSIQ. numerical values range from "1.  The responses and their  Describes me very well, to, 6.  not describe me at a l l " (Offer et a l . , 1982a, p. 5).  Does  Half of the items  in each subscale are worded positively, the other half are worded negatively.  The numerical value circled for the postively worded items  remain the raw score for that item.  A formula for calculating the raw  score of the negatively worded items is provided in the OSIQ manual (Offer et a l . , 1982a, p. 5)).  A subject's raw score for any subscale  is the sum of the circled values for the positive and calculated negative items. In this study subscale scores for the groups investigated were not presented in raw score form.  Instead, the raw scores were converted to  standard scores and were expressed in standardized form with a mean of 50 and a standard deviation of 15.  The standard scores were computed by  subtracting a subject's raw score for a particular subscale from the mean raw score of the age - and sex - appropriate group for that  30 subscale.  This figure was then divided by the standard deviation of raw  scores for the age - and sex - appropriate group for that subscale. This figure was multiplied by 15 and 50 was added to that product.  This  method of scoring is called standard scoring methodology (Offer et a l . , 1984b).  As a result, a standard score of 50 signifies a score equal to  the appropriate normal reference group mean implying normal adjustment in the corresponding subscale. A score lower than 50 signifies poorer adjustment than that of normals.  A score higher than 50 signifies  better adjustment than that of normals (Offer et a l . , 1982a). Reliability Internal consistency.  This measure of reliability of the OSIQ has  been assessed by a statistical method called alpha (Cronbach, 1970) which when applied to OSIQ data demonstrated that the questionnaire's subscales were internally consistent.  The alpha coefficient for each  OSIQ subscale for four different normal adolescent samples investigated from 1962 to 1969 ranged from .36 to .88, demonstrating moderately low to highly acceptable internal consistencies for the subscales (see Appendix A).  Good internal consistency also was shown by intergroup  differences at the item level.  Examination demonstrated that, in  general, inconsistent group differences among items in any one subscale were rare (Offer et a l . , 1981a; 1982a). Overlap between most of the subscales has been quite high in practice, particularly in light of the size of their internal consistencies.  Correlations between subscales have been high enough to  31 justify summing their scores to yield a total score, an overall measure of an adolescent's self-image.  However, distinctions among clusters of  these subscales have been ample enough to justify retaining their separate identities (Offer et a l . , 1981a; 1982a). Stability.  Data obtained in 1979 on two occasions, six months  apart, from a sample of normal teenagers who lived in suburbs in the Chicago area demonstrated that the subscale scores are almost as stable as they are internally consistent.  The stability coefficients for these  data ranged from .48 to .84 for the subscales, and was .73 for the total score (Offer et a l . , 1981a; 1982a). Stability of subscale scores over time also has been demonstrated by a longitudinal study conducted over an eight year period.  In 1962,  subjects were chosen for the longitudinal study on the basis of their average scores on at least 9 of the 11 OSIQ subscales.  Eight years of  follow-up research revealed that the selected subjects functioned normally in every area tested by the 11 subscales (Offer, 1969). Interrater r e l i a b i l i t y .  The use of only one rater, the subject  himself, and use of an a priori scoring scheme that allows computer scoring of the questionnaires avoids the problems related to  interrater  agreement reliability of the questionnaire. Validity Predictive validity.  The previously mentioned longitudinal study  of the self-images of normal adolescent boys, begun in 1962, also demonstrated predictive validity of the OSIQ.  The selected subjects had  32 average (normative) scores in at least 9 of the 11 subscales tested. Eight years after the i n i t i a l testing of these subjects the vast majority repeated the original findings revealing normal self-images (Offer, 1969). Concurrent validity.  Four studies (Coche & Taylor, 1974, p.  147-149; Dudley, Craig & Mason, 1981, p. 454, 460; Hjorth, 1980;  Offer,  1969) have examined the correlation of the OSIQ with the Bell Inventory, the Minnesota Multiphasic Personality Inventory (MMPI), and the Tennessee self-image test.  The results of these studies indicate that  moderate to high correlations exist between these instruments and the OSIQ. Data Analysis Descriptive statistics at the nominal and ordinal level were used to provide demographic profiles of the adolescent study participants with IBD.  These profiles are visually displayed in Tables 1 and 2  (see Chapter 4). Standard scoring methodology (see Scoring, Chapter 3) was used to analyze and interpret the data.  To illustrate similarities and  differences between the various study groups graphically, profiles for each group were drawn displaying the IBD groups' means for each OSIQ subscale in relation to the control group (normative sample) mean of 50 (see Figures 1 and 2, Appendix E). Only summary statistics were available in this study rather than the complete l i s t of raw or standard scores for individuals in both the  33 experimental and control groups that is necessary for the process of ranking to compute tests of difference, between groups.  Therefore,  rank-based nonparametric tests which make use only of ordinal standings of data values (as found in this study) could not be employed. In addition, the seeking out of promising differences from summary statistics and proceeding to test these differences for significance would have resulted in "stacking the odds" in the investigator's favor. Therefore to decrease the probability of Type I Error, this kind of data analysis was not employed. As a result, comparisons between the IBD adolescents' group means and subgroups means and those of the normal adolescents were made by the use of two-tailed t-tests. considered significant.  Differences at the .05 level or less were  The results of the t-tests were used as a rough  guide only, in the analysis and interpretation of data, because more appropriate methods could not be used and the t-test is appropriate primarily for ratio scales.  The t-tests' approximate p-values were  interpreted only with some reservation and caution. The ideal nonparametric analogue to the t-test, the Wilcoxin Rank Sum Test, was not utilized for data analysis in this study because it was unlikely this test would yield a different conclusion from the t-test, i f the samples and data had not met all the assumptions necessary for appropriate use of the t-test. Finally, to explain subscale score differences among the groups investigated in this study, participants' percent endorsements of items  34 were compared at the item level.  A percent endorsement for a group,  with respect to an item, is the percent of subjects in that group responding positively to that item. can range from 0 to 100 percent.  As a result, percent endorsements  Responses of 1 (describes me very  well) to 3 (describes me fairly well) constitute an endorsement of the item.  Responses of 4 (does not quite describe me) to 6 (does not  describe me at all) represent a failure to endorse the item. A difference in percent endorsement, with respect to any given item, between a group of physically i l l adolescents and a control group was considered notable by the investigator only i f it exceeded ten percentage points.  After comparing the standard score means and the  percent endorsements of subscale-specific items of the study groups, the investigator should be able to demonstrate any existence of possible effects of IBD or growth retardation on the adolescent self-image or of possible differences between the study groups.  The investigator could  then discuss the possible effects of IBD or growth retardation on the adolescent self-image or of possible differences between study groups. The investigator also should inform the reader that the study would not be able to rule out the aforementioned p o s s i b i l i t i e s , and should alert the reader to the potential for existence of these possibilities in practice. Although Offer et a l . (1981a, 1982a, 1984a) have compared the scores of younger and older male and female samples, the scores of  35 Table 1 Distribution of Older and Younger Males and Females with IBD by Groups  Groups  IBD Gender and Age Categories  (N = 24)  IBD  IBD with  without GR  GR  (n = 13)  (n = 11)  ji  n_  _n  13-15 years of age  5  4  1  16-19 years of age  _8  2  6  13  6  1  13-15 years of age  6  3  3  16-19 years of age  _5  4  1  11  7  4  Males  Total Females  Total  younger and older adolescents forming the groups in this study were combined to increase the number of participants in each group.  Numbers  of participants would have been exceptionally small in some IBD subgroups had this not been carried out (see Table 1).  In other  research, Offer et a l . (1981a) have shown that age generally has l i t t l e effect on self-image scores.  However, male and female group means and  36  percent endorsements of items were calculated and compared separately among the study groups.  Offer et a l . , (1984a) have claimed that  physical illness might have very different self-image effects upon boys than it does upon g i r l s .  37 CHAPTER FOUR  Results and Discussion  Overview  The results of this investigation contributed to the understanding of a) the self-image of adolescents with inflammatory bowel disease (IBD) and b) the influence of growth retardation (6R) on the self-image of adolescents with IBD.  The data revealed notable similarities and  differences among the groups investigated with respect to perception of self.  Responses to questions implied by the purposes of the study  formed the basis for discussion of the study's findings.  The results  and their discussion are preceded by the presentation of limiting factors influencing interpretation of the findings. The results are presented and discussed according to the following headings: 1.  Description of the sample and specific sample characteristics;  2.  The self-image of adolescents with IBD based upon the  following 11 subscales believed to represent the adolescent self, as they are organized under the 5 major selves from the conceptual framework (Offer et a l . , 1981a):  38 i)  the psychological self (PS) including PS-1: control, PS-2:  emotional tone, and PS-3:  impulse  body and  self image; ii)  the social self (SS) including SS-1: relationships, SS-2:  social  morals, and SS-3:  vocational  and educational goals; iii)  the sexual self (SXS) including SXS:  sexual  attitudes; iv)  the familial self (FS) including FS:  family  relationships; v)  the coping self (CS) including CS-1: external world, CS-2:  mastery of the  psychopathology, and CS-3:  superior adjustment. 3.  Similarities and differences in self-image among the IBD  adolescents with and without GR and their healthy peers. The presentation of results and the discussion is organized according to the 11 Offer Self-image Questionnaire (OSIQ) subscales as they have been grouped under the 5 major selves by Offer et a l . (1981a). The results for each of the 11 subscales are presented selectively through examination of descriptive summary statistics for four groups of adolescents:  the normative sample (N=1385), those with IBD (N=24),  those with IBD without growth retardation with growth retardation  (n=13), and those with IBD  (n=ll). Similarities and differences among  females and males within groups are also discussed.  The summary  39 statistics utilized to describe and compare the participant groups' self-perceptions are the arithmetic means of the groups' standard scores for each subscale and the percent endorsements of subscale-specific items in the OSIQ. OSIQ.  Each subscale is comprised of from 9-19 items in the  A standard score mean of 50.00 signifies a score equal to the  appropriate normal reference group mean.  A score lower than 50.00  signifies poorer adjustment than that of normals while a score higher than 50.00 signifies better adjustment than that of normals in a particular subscale (Offer et a l . , 1982a).  A percent endorsement of an  item, for a group, signifies the percentage of subjects in that group responding positively to that item (Offer et a l . , 1984a) (see Chapter 3, p. 34).The values obtained for the study's IBD participants are compared, by permission, to normative data derived from the study of 1385 adolescents without known physical, mental or behavioral disorders (Offer et a l . , 1981a). Limiting Factors Influencing Interpretation of Findings As a result of the convenience sampling method used to procure sufficient study participants meeting e l i g i b i l i t y c r i t e r i a , some uneven distributions among the study's two subgroups (IBD subjects with or without growth retardation)  were rendered.  Although the sampling method  resulted in an almost even distribution of males and females and growth retarded and non-growth retarded IBD subjects, the sizes of these subgroups were relatively small (see Table 2).  In addition, the  distribution of females within the IBD subgroups was relatively unequal  40 Table 2 Distribution of Gender, IBD Classifications and Incidence of Growth Retardation, Bowel Surgery and Ileostomy/Colostomy in the IBD Sample (N = 24)  Group  Growth Retarded  Non-Growth retarded  Total  Females Crohn's disease  4  5  9  Ulcerative colitis  0  2  2  Unclassified IBD  0  0  0  Bowel surgery  1  2  3  IIeostomy/col ostomy  0  2  2  Crohn's disease  7  2  9  Ulcerative c o l i t i s  0  3  3  Unclassified IBD  0  Bowel surgery  5  1  6  II eostomy/col ostomy  1  1  2  Males  Note.  There is a missing value each for bowel surgery and  i1eostomy/colostomy incidence.  1  1  41 (4:7)  although the distribution of males was almost equal (7:6), and the  number of males and females in these subgroups was small. The method of selecting subjects also resulted in a highly uneven distribution of IBD conditions among the sample.  Three-quarters of the  IBD sample had Crohn's disease while one-quarter had ulcerative colitis.  As a result all subjects with GR had Crohn's disease.  Eight  of the 9 individuals who had had bowel surgery had Crohn's disease and therefore, most were growth retarded.  Of the four individuals who had  ileostomies or colostomies, three had Crohn's disease.  Finally, twice  as many males as females had had bowel surgery (see Table 2). Subjects also were not matched for age or severity of illness at the time of participation in the study.  Because subjects were unevenly  matched for confounding factors such as age, gender, severity of i l l n e s s , type of IBD, presence of ileostomy/colostomy and past history of bowel surgery, cautious and judicious interpretation of findings was instituted by the investigator and the same use of findings is indicated for the reader. Description of the Sample Participants who met the e l i g i b i l i t y criteria for this study were originally selected from the client l i s t s of the two primary physicians at the B.C. Children's Hospital who attend children with IBD.  Of the 43  potential subjects, one was unknown at the forwarding address provided and ultimately unreachable, one had moved to another province, and another's address could not be determined.  Of the remaining 40  42 potential participants, six wrote letters to the investigator or telephoned expressing the wish not to participate in the study.  Another  9 subjects did not respond to the request to participate in the study. Of the remaining 25 candidates, one participant's responses to the OSIQ were ruled ineligible due to too high a frequency of consecutive same-type responses.  A total of 24 participants completed the study  requirements. The 24 adolescents in the study were between the ages of 12 and 20 and included 11 females and 13 males, 11 of whom had growth retardation.  Eighteen of the participants were diagnosed with having  Crohn's disease, 5 participants with ulcerative c o l i t i s and one with having IBD. Of the 24 study participants, only one had a documented presence of delayed development of secondary sexual characteristics (DDSSC).  The  individual also had a significantly younger bone age than chronological age and a height measure equal to or less than the 10th percentile for age. Most of the participants had lived in Canada all or almost all of their lives and most were of North American Anglo ethnic origin.  The  majority of the study participants were situated within the middle socioeconomic level as identified using a modified four factor index by Hollingshead (1975).  All families had at least one parent employed  outside of the home (see Table 3).  43 Table 3 Selected Characteristics of the IBD Sample Years lived in Canada All their lives All their lives, - less 1 year (or less) - less 3 years - less 4 years - less 5 years Missing value Total Ethnic Origin North American Anglo European Indo/Asian Missing value Total Socioeconomic Status Low Middle Upper Missing value Total Number of Parents Employed Outside of the Home None One Two Missing value Total *  Sample incidence (N = 24) 16 4 1 1 1 _1_ 24 Sample incidence (N = 24) 17 3 3 _1_  24 Sample incidence (N = 24) 0 20 2 2 24 Sample incidence (N =24) 0 10* 13** 1 24  Two of these families have an adolescent with growth  retardation.  * * Nine of these families have an adolescent with growth retardation.  44 The Self-image of Adolescents with IBD The data provided in the following sections include responses to questions on the OSIQ related to how study participants saw, thought and felt about themselves according to the 5 major selves, further classified into 11 subscales, as outlined by Offer et a l . (1981a).  The  OSIQ was administered specifically to reveal information allowing for description of the self-image of the adolescents with IBD in this study.  The questionnaire was also administered to reveal  similarities  and differences among the participant groups' and subgroups' perception of self according to the 11 subscales in the OSIQ. Perception of the Psychological Self The aspect of psychological self embodies the adolescent's concerns, feelings, wishes and fantasies.  It includes three subscales  a) impulse control - the participants' sense of control over their own impulses, b) emotional tone - the emotions they experience and c) body and self image - their conception of their bodies and related self-esteem and confidence (Offer, et a l . , 1981a; 1982a). Impulse control.  This subscale measures the adolescents' strength  to ward off various pressures existing in their internal and external environments (Offer et a l . , 1981a).  Comparisons of the standard score  means for impulse control plus previously compared percent endorsements of subscale-specific items for the normative and IBD samples suggested that the males and females with IBD and the IBD sample, overall, compared favorably with the norm (see Table 4).  The investigator  45 Table 4 Normative and IBD Samples' Standard Score Means for Impulse Control  Samples  Subscale  Normative  n  IBD  n  Impulse control Males & females  49.98  1385  52.24  24  Males  49.99  585  54.41  13  Females  49.97  800  49.67  11  interpreted the findings to suggest that the IBD adolescents have reasonable tolerances for frustration and do not act impulsively.  The  investigator also speculated from the results that this group of chronically i l l individuals believe they have control over their lives and themselves in ordinary l i f e situations.  These findings are  generally concordant with those of other investigators who have examined the self-image of physically i l l adolescents with respect to this subscale (Landon et a l . , 1980; Offer et a l . , 1981a, 1984a). Emotional tone. This subscale measures the degree of affective harmony, that i s , the extent of emotional stability and fluctuation the adolescents perceived they experienced (Offer et a l . , 1981a). Comparisons of the standard score means for emotional tone (see Table 5)  46 Table 5 Normative and IBD Samples' Standard Score Means for Emotional Tone  Samples  Subscale  Normative  n  IBD  n  Males & females  50.00  1385  50.86  24  Males  49.99  585  47.24  13  Females  50.00  800  55.16  11  Emotional Tone  and the percent endorsements of subscale-specific items overall for the normative and IBD samples suggest that the IBD sample, overall, compared favorably with the norm in emotional tone (see Appendix A).  However,  comparisons of percent endorsements of subscale-specific items revealed considerable low adjustment in the IBD males in only one aspect, with respect to their experiencing consistent emotional satisfaction in their lives.  They reported more frequently than the normative sample, who had  already highly endorsed this item, that they were "so very anxious" (see Appendix C).  S t i l l , the majority of the adolescents with IBD did not  endorse that they felt tense most of the time suggesting to the investigator that the anxiety reported is not consistently experienced and may refer to feelings associated only with new or unusual  47 situations.  They did highly endorse feeling happy most of the time and  feeling relaxed under normal circumstances (see Appendix A).  Therefore,  the investigator also speculated that it cannot be inferred legitimately that the anxiety felt by these adolescents was associated with concerns about their i l l n e s s .  Similar findings of high endorsement of the  feeling anxious and low endorsement of the feeling tense most of the time subscale items, among physically i l l subjects in other studies of adolescent self-image, are supported by and support the findings and interpretation made by this investigator (Kellerman et a l . , 1980; Offer et a l . , 1981a; 1984a). Body and self image.  The body and self image subscale measures the  extent to which adolescents had adjusted to or felt awkward about their bodies and themselves in general (Offer et a l . , 1981a).  Comparisons of  the standard score means for body and self image (see Table 6) plus percent endorsements of subscale-specific items suggested that the adolescents with IBD overall, but chiefly the females, were less adjusted than the normative sample with respect to confidence in and satisfaction with their bodies, their health and themselves. According to the percent endorsements of specific items, the females were notably more worried about their health in the past year and felt less strong and healthy than did their healthy peers and the males with IBD.  Also,  the females with IBD more often felt that others saw them as being poorly developed and slightly less often felt proud of their bodies than did the norm and the males with IBD (see Appendix A).  48 Table 6 Normative and IBD Samples' Standard Score Means for Body and Self Image  Samples  Subscale  Normative  n  IBD  n  Body and self image Males & females  49.60  1385  47.15  24  Males  49.05  585  49.74  13  Females  50.00  800  44.10  11  These particular findings may not indicate that the female teenagers with IBD have an unusually poor body image because it is not uncommon for female adolescents to be particularly sensitive about and c r i t i c a l of their developing bodies (Offer et a l . , 1981a, p. 99).  The  results may suggest that the IBD females are more sensitive than males to any impairment of their bodies.  Offer et a l . (1981a) found that  their normative male sample presented a much more positive feeling than did the females about their bodies and physical development.  However,  the investigator speculates that the findings related to percent endorsements of selected subscale items may suggest that these chronically i l l adolescents are realistically aware of and legitimately concerned about their health status and any perceived problems related  49 to their physical development resulting from their illness.  The results  demonstrated notable lesser adjustment among the IBD female adolescents in only 3 of the 9 body and self image subscale items assessed, when compared to normative sample values.  This finding led the investigator  to suggest that, in general, the adolescents with IBD may be coping relatively successfully with their fears and worries about bodily changes related to their developmental l i f e stage and concerns about any physical impairment related to their illness or its management. These findings support some of the findings of other similar investigations.  Offer et a l . (1981a; 1984a) and other researchers cited  in Offer et a l . (1984a) have found that several groups of chronically physically i l l adolescents, for example, those with asthma, cancer, cystic fibrosis, severe acne, marked pubertal delay, hypertension and kidney disease, were affected.  There was a range of mild to severe  maladjustment among the groups in terms of body image self-perceptions. Those with cancer were mildly less well-adjusted and those with cystic fibrosis were severely less well-adjusted than the norm with respect to how they viewed their bodies.  Zeltzer et a l . ' s (1980) data revealed  that the females in both their healthy and chronically i l l groups reported a greater impact of illness and treatment on their physical appearance than did the males.  The boys in Tavormina et a l . ' s (1976)  chronically i l l sample reported significantly fewer problems with physical appearance and attributes than did the g i r l s .  Crozier (1982)  found that her sample of adolescents with ulcerative c o l i t i s indicated  50 both positive and negative body and self image perceptions arising from the impact of illness symptoms, current treatments and hospitalizations.  Those that had ileostomies demonstrated a healthier  sense of body image than those who had not had surgery, a sense of body image that was equivalent to their healthy peers' except for a lesser involvement in certain extracurricular activities such as sports and dating than was found in the norm. Perception of the Social Self The social self embodies adolescents' sociability, morality and vocational ideals.  It includes the three subscales a) social  relationships - adolescents' perceptions of their  interpersonal  relationships, b) morals - their moral attitudes, values and standards, and c) vocational and educational goals - their vocational and educational values and ideals (Offer et a l . , 1981a). Social relationships.  This subscale measures object relationships  and friendship patterns (Offer et a l . , 1981a).  Comparisons of the  standard score means for social relationships (see Table 7) plus percent endorsements of subscale-specific items revealed that the adolescents with IBD perceived themselves to be better adjusted overall in their interpersonal relationships than did the normative sample.  In only one  of the 9 subscale-specific items assessed did the IBD adolescents, particularly the females, demonstrate lesser adjustment than the norm. They indicated more often that they were sensitive to being rejected by others than did the norm (see Appendix A).  51 Table 7 Normative and IBD Samples' Standard Score Means for Social Relationships  Samples  Subscale  Normative  n  IBD  n  Social relationships Males & females  50.38  1385  56.03  24  Males  50.94  585  56.72  13  Females  49.96  800  55.22  11  The overall findings lead the investigator to speculate that these adolescents have a wel1-developed capacity for friendship and empathy with others.  Offer et a l . (1981a; 1984a) found either no significant  differences, in general, between their physically i l l and normal samples or better adjustment among the physically i l l than the norm with respect to their sociability.  They did find some small differences between  their samples that were not revealed by this investigator's data.  Their  physically i l l sample indicated more often than the norm that they usually felt out of place at picnics and parties and found it hard to make friends.  extremely  They also reported more often than the norm that  they got terribly upset i f others disapproved of them, as did this investigator's physically i l l sample, evidencing the previously assessed sensitivity to rejection by others.  52 Morals.  This subscale measures the extent to which the  adolescent's conscience had developed (Offer et a l . , 1981a). Comparisons of the standard score means for  morals (see Table 8) plus  percent endorsements of this subscale's items revealed that females and males with IBD reported a perceived sense of duty, responsibility and concern for others that was more wel1-developed than that reported by the normative sample.  The investigator's findings concurred with those  of Offer et a l . (1981a) with respect to their physically i l l sample.  Table 8 Normative and IBD Samples' Standard Score Means for Morals  Samples  Subscale  Normative  n  IBD  n  Morals Males & females  49.98  1385  53.96  24  Males  50.01  585  53.33  13  Females  49.96  800  54.72  11  The findings have lead the investigator to speculate that chronically physically i l l adolescents may be more sensitive to the needs of others and may be highly motivated to do the right thing by others possibly  53 resulting from a desire to be morally well-treated by others.  The  investigator postulates that these behaviors may stem from feelings of vulnerability perhaps related to the illness-experience of these adolescents and any existing physical disabilities they may have. Vocational and educational goals.  The vocational and educational  goals' subscale measures how well the adolescents were preparing themselves for a future vocation (Offer et a l . , 1981a).  Comparisons of  the standard score means for vocational and educational goals (see Table 9) plus percent endorsements of items specific to this subscale suggest that, overall, the adolescents with IBD have worked as effectively within their educational systems and have made as reasonable plans for the future as have the normative sample.  When subscale-specific items  were examined for comparisons, in only one respect did the adolescents with IBD indicate that they were less adjusted than their healthy peers.  Three times as many of the teenagers with IBD felt that working  was too much of a responsibility for them as did the normal teens, although only 21% of the IBD sample endorsed this item (see Appendix A).  The investigator was lead to speculate that similar results  rendered by a larger sample in future studies would suggest that these chronically i l l adolescents may be demonstrating an awareness of real limitations that may be created for them in the general educational system or workplace by the potentially disruptive nature of their illness.  54 Table 9 Normative and IBD Samples' Standard Score Means for Vocational and Educational Goals  Samples  Subscale  Normative  n  IBD  n  Vocational and educational goal s Males & females  49.99  1385  51.82  24  Males  50.00  585  51.32  13  Females  49.99  800  52.42  11  The findings of Offer et a l . (1981a) indicate that their physically i l l sample endorsed work values, felt optimistic about their futures and felt that working was too much of a responsibility for them, similarly to this investigator's IBD sample.  Samples of physically i l l  adolescents in other studies demonstrate equal or better than average adjustment in this dimension except for the females with cystic fibrosis whose responses indicate considerably less adjustment than the norm (cited in Offer et a l . , 1984a).  55 Perception of the Sexual Self The sexual self concerns the adolescents' perception about their sexuality and sexual experiences and behavior.  It  is a separate  dimension of self consisting of the sexual attitudes subscale alone (Offer et a l . , 1981a). Sexual attitudes.  This subscale assesses the adolescents'  feelings, attitudes, and behavior towards the opposite sex (Offer et a l . , 1981a).  The normative and IBD samples' standard score means for  sexual attitudes are provided in Table 10.  Table 10 Normative and IBD Samples' Standard Score Means for Sexual Attitudes  Samples  Subscale  Normative  n  IBD  n  Sexual attitudes Males & females  50.00  1385  47.15  24  Males  49.99  585  53.33  13  Females  50.01  800  39.86  11  These scores plus percent endorsements of subscale-specific items suggest that the female adolescents with IBD are considerably less  56  adjusted than the norm and the males with IBD with respect to sexual attitudes.  Percent endorsements of specific items revealed that the  females with IBD found it threatening to think or talk about sex and d i f f i c u l t to handle sex in a right way considerably more often than did the females in the normative sample.  However, both males and females  with IBD perceived themselves to be "sexually way behind" more often than the norm (see Appendix C).  The females reported that sexual  experiences gave them pleasure considerably less often than did the females in the normative sample.  Yet, both males and females indicated  that having a girlfriend/boyfriend was important to them as often as did the normative sample (see Appendix A). These findings led the investigator to postulate that even though the adolescents with IBD may recognize their concerns about their sexual maturation they do not appear to deny the importance to themselves of its development in a natural way.  The investigator is of the opinion  that the results may reveal that the IBD females are not as sexually active as are the normative females but whether this is a consequence of IBD or not is not explicit.  The investigator speculates that these  findings may demonstrate the legitimate concerns these adolescents have about the real or potential effects of their chronic illness and its management on their capacity for normal sexual maturation and development of relationships. These results are generally concordant with the results of Offer et a l . (1981a), however, the adolescents with IBD in this study revealed a  57  more positive sexual self-image than did Offer et a l . ' s physically i l l sample.  It is of note that these authors also found that their normal  male sample revealed they were more open to sexual feelings than were the females.  The investigator queries whether the attitude of greater  openness towards sexuality found among their males in the normative group may be a theme that recurs among all teenagers in North American middle-class society. Perception of the Familial Self The familial self reflects adolescents' feelings and attitudes towards their families.  It is believed that the feelings and attitudes  adolescents have towards their families are crucial for their overall psychological health.  It is believed that, i f everything else is kept  constant, a well-functioning family unit will contribute relatively more to the positive development of adolescents than will any other psychosocial variable (Offer et a l . , 1981a).  One subscale, family  relationships, reflects how well the adolescent's family unit functions. Family relationships.  This subscale measures the emotional  atmosphere in the home (Offer et a l . , 1981a).  Comparisons of the  normative and IBD samples' standard score means for family relationships (see Table 11) plus percent endorsements of subscale-specific items suggested that the adolescents with IBD perceived themselves to relate better and communicate more openly with their parents than did the norm.  However, these adolescents, especially the males, indicated  lesser adjustment than their counterparts in the normative sample in two  58 items specific to this subscale.  They reported that they try to stay  away from home most of the time and usually feel they are a bother at home more often than the norm (see Appendix A). These findings suggest an overall positive relationship between these adolescents and their families and concur with the findings of other similar studies (Offer et a l . , 1981a).  The investigator  speculates that the findings may also suggest that the males with IBD clearly felt they were somewhat of a burden to their families perhaps because of the perceived effects their chronic illness had on family functioning.  Table 11 Normative and IBD Samples' Standard Score Means for Family Relationships  Samples  Subscale  Normative  n  IBD  n  Family relationships Males & females  49.98  1385  53.68  24  Males  49.99  585  50.30  13  Females  49.98  800  57.67  11  59 Perception of the Coping Self Answers to the items with respect to the coping self reflect the ego strength the adolescents possess and how they cope with or adapt to stress.  The coping self includes the subscales a) mastery of the  external world and b) superior adjustment.  The answers to items in  these subscales describe how adolescents perceive themselves coping with their world.  The third subscale of the coping self, c) psychopathology,  reveals the signs and psychopathological symptoms the respondents state they have (Offer et a l . , 1981a). Mastery of the external world.  This subscale measures how well the  adolescents adapted to their immediate environment (Offer et a l . , 1981a).  Comparisons of the normative and IBD samples' standard scores  means for mastery of the external world (see Table 12) plus percent endorsements of subscale-specific items suggested that the adolescents with IBD adapt to and function in their immediate environment without undue fear, doubt, indecision and frustration as effectively as their healthy peers do.  The adolescents with IBD revealed lesser  adjustment than the norm on only one of the items in this subscale. They endorsed that they repeat things continuously to be sure they are right considerably more often than did the normative sample (see Appendix A).  The overall findings of this study, with respect to the  subscale mastery of the external world, support the findings of Offer et a l . , (1981a) in relation to their physically i l l sample.  60 Table 12 Normative and IBD Samples' Standard Score Means for Mastery of the External World  Samples  Subscale  Normative  _n  IBD  n  Mastery of the external world Males & females  49.89  1385  50.41  24  Males  49.73  585  48.55  13  Females  50.00  800  52.60  11  Psychopathology.  This subscale identifies any overt or severe  psychopathology present within the adolescent (Offer et a l . , 1981a). The normative and IBD samples' standard score means for psychopathology are displayed in Table 13.  Comparisons of these scores plus percent  endorsements of subscale-specific items revealed that adolescents with IBD generally perceived themselves to be depressed, suffering or in pain when dealing with people and situations in their worlds slightly less often than did their healthy peers.  However, the males with IBD  reported that they felt empty emotionally most of the time and had strange and funny feelings when they entered a new room more often than their healthy male counterparts did, perhaps indicating feelings of  61 self-consciousness (see Appendix A).  These general and specific  findings were similar to those of Offer et a l . (1981a) with respect to their physically i l l sample.  Table 13 Normative and IBD Samples' Standard Score Means for Psychopathology  Samples  Subscale  Normative  n  IBD  n  Psychopathology Males & females  49.98  1385  52.68  24  Males  49.99  585  49.31  13  Females  49.97  800  56.67  11  Superior adjustment.  This subscale measures how well adolescents  coped with themselves, significant others and their worlds (Offer et a l . , 1981a).  Comparisons of the normative and IBD samples' standard  score means for superior adjustment (see Table 14) plus percent endorsements of specific items suggested that the adolescents with IBD coped better with themselves, significant others and their worlds than their healthy peers did.  However, the males with IBD did report more  often than did their healthy male peers, that they did not enjoy solving  62 d i f f i c u l t problems, demonstrating less adjustment on one item specific to the superior adjustment subscale.  The findings did not suggest that  it was harder for these adolescents to make friends easily than it was for their healthy peers as was found in Offer et a l . ' s physically i l l sample (1981a).  Table 14 Normative and IBD Samples' Standard Score Means for Superior Adjustment  Samples  Subscale  Normative  n  IBD  n  Superior adjustment Males & females  49.96  1385  53.74  24  Males  49.99  585  53.12  13  Females  49.94  800  54.47  11  Additional Analysis The two-tailed t-tests performed on the standard scores of the normative and IBD samples for each subscale in the OSIQ did not reveal statistically significant differences between the groups at the p-value of 0.05.  As it was discussed in Chapter 3, since the methodology did  not meet all the assumptions required for the appropriate use of t-tests  63  in this study, the investigator was not able to rule out, by t-test results, the possible effects or differences among groups incurred by the presence or absence of IBD or IBD and growth retardation that were suggested by comparisons of standard score means and percent endorsements of subscale-specific items found in the discussion of the results. Summary The results revealed that the adolescents with IBD saw, thought and felt themselves to be similar to the way their healthy peers saw, thought and felt themselves to be, in most respects.  The IBD sample  perceived themselves to be in control of their impulses, to experience emotional harmony and stability consistently, to be able to form satisfactory interpersonal relationships and to possess moral values and endorse work values commensurate with those of the larger society.  They  indicated they had positive feelings towards their families and family l i f e , were optimistic about their futures, coped well with their fears, doubts, stresses and shortcomings related to themselves, significant others and their worlds, in general, and did not report overt psychopathological signs and symptoms.  However, the females with IBD  perceived themselves to be considerably more worried about their health and to feel considerably less strong and healthy than did the normative and the male IBD samples. made by chronically i l l  The expression of these concerns and feelings  individuals is not unexpected.  The investigator  speculates that less frequent expression of these sentiments by the  64 males with IBD than the females may be explained by a possible decreased sensitivity to impairment of their bodies or by differing illness experiences among the males at the time of response to the study questionnaire, variables that were not controlled for in the study.  In  addition, the IBD females, in particular, revealed less confidence in their sexuality and sexual maturation than the normative and male IBD samples.  The investigator proposes that this finding may be explained  by an increased sensitivity to body impairment, heightened criticism of the developing body during the pubertal l i f e stage and greater sexual inactivity among these females than among the other samples in the study. The overall findings did not lend support to the hypothesis that these individuals "bring on" their illness as a result of existing specific "deviant" personality traits or psychological conflicts nor did they lend support to the supposition that adolescents with IBD tend to develop psychological problems as a consequence of the illness and its manifestations and treatments (Foulds, 1984).  Rather the participants'  self-perceptions in the 11 areas measured indicated that these chronically physically i l l adolescents possess strength of character and effective coping abilities (Tavormina et a l . , 1976).  The findings  indicated that they have a generally positive self-image and are psychologically as well-adjusted as the norm in most aspects of the self examined (see Figure 1, Appendix E).  65 The findings of studies investigating singular or multiple aspects of the self-image of physically i l l adolescents generally concurred with this investigator's findings except for the few small differences previously noted (Adams & Weaver, 1986; Crozier, 1982; Kellerman et a l . , 1980; Offer et a l . 1981a; Tavormina et a l . , 1976; Zeltzer et a l . , 1980).  An exception to this are the findings of Landon et a l . (1980) in  their study of cystic fibrosis teenagers. with a distinctly disturbed self-image.  These adolescents presented They reported adjustment equal  to or better than the norm in only one of the OSIQ subscales assessed, the familial self.  The major differences between these adolescents and  the other physically i l l samples in the study were that the genetic disorder, cystic fibrosis, is known to be lethal generally in young adulthood, and often to result in delayed growth and sexual development (Landon et a l . , 1980).  Perhaps these factors played a part in  influencing these adolescents to present themselves with a disturbed self-image. Similarities and Differences in Self-image Among the IBD Adolescents with and without Growth Retardation and their Healthy Peers Had the two IBD subgroup samples, those with growth retardation and those without, been larger in numbers and more equally distributed with respect to frequencies of age, gender, type of IBD, past history of bowel surgery and presence of ileostomy/colostomy, the effect of growth retardation on the self-image of adolescents with IBD could have been  66 more effectively controlled for and assessed.  Therefore, the results of  the study have been interpreted with caution. The following presentation of results and the discussion of findings will follow the same format used to describe the self-image of IBD adolescents.  Summary s t a t i s t i c s , means of standard scores per  subscale for groups and percent endorsements of subscale-specific items, will be used to describe and compare self-images of the groups being investigated and to interpret the effects of growth retardation on the self-image of adolescents with IBD.  The results of t-tests performed on  the standard score means and standard deviations for the normative and the growth retarded samples will be discussed. The two-tailed t-test results of comparisons between the normative and growth retarded IBD samples of standard score means and standard deviations for subscales did not reveal statistically significant differences at the p-value of 0.05.  However, this test of difference  was being used only as a rough guide (since the study did not meet all the assumptions inherent in the use of t-tests) because more appropriate statistical tests of difference could not be used, since only summary statistics were available in the normative sample rather than a complete l i s t of raw and standard scores for individuals.  Therefore,  similarities and differences among the males and females in the normative sample and IBD subgroups were reviewed, based on comparisons of subscale standard score means and percent endorsements of selected subscale-specific items.  67 Perception of the Psychological Self Impulse Control.  Comparisons of the three groups' standard score  means for impulse control (see Table 15) and percent endorsements of subscale-specific items revealed that the IBD adolescents with GR perceived themselves to be as able to ward off pressures existing in and outside of themselves and delay gratification as did their  healthy  peers, but less able than the non-growth retarded sample overall. The IBD males without GR perceived themselves to be particularly well-adjusted with respect to control of their impulses.  Landon et  a l . ' s (1980) male cystic fibrosis sample with GR (N = 16) and a growth  Table 15 Normative Sample's and IBD Subgroups' Standard Score Means for Impulse Control by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Impulse control Males & females  49.98  1385  53.68  13  50.54  24  Males  49.99  585  58.70  6  50.74  13  Females  49.97  800  49.37  7  50.20  11  68 retarded but otherwise healthy male sample (N = 34), used for comparison purposes, showed marked lesser adjustment on at least 7 of the 11 OSIQ subscales assessed when their values were compared to those of their normative sample.  Perceived ability to control impulses was one of the  subscales these male growth retarded samples revealed marked lesser adjustment in when compared to the norm. Emotional Tone.  Comparison of the three groups' standard score  means for emotional tone (see Table 16) and percent endorsements of subscale-specific items suggested that the male adolescents with IBD and GR experienced more emotional disharmony than the females with GR and  Table 16 Normative Sample's and IBD Subgroups' Standard Score Means for Emotional Tone by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Emotional tone Males & females  50.00  1385  55.36  13  45.56  Mai es  49.99  585  52.88  6  42.40  Females  50.00  800  57.48  7  51.10  69 the normative and non-growth retarded samples.  The data also suggested  that the females with GR experienced somewhat more harmonious and stable emotions than the normative sample.  To be more specific, the males with  GR endorsed that they were very anxious considerably more often than the norm did.  However, they did not endorse that they felt tense most of  the time nearly as frequently as they endorsed feeling anxious, a response similar to the normative sample's response.  These findings  led the investigator and authors of similar studies to suggest that the anxiety reported is not continuous and may apply only to new or unusual situations, as was previously inferred in the discussion found in the section The Self-image of Adolescents with IBD (Offer et a l . , 1981a). Therefore, it also cannot be inferred unequivocably that high endorsement of feelings of anxiety among these individuals stemmed from usual concerns or dealings with their chronic illness or its manifestations.  The growth retarded males also reported feeling  inferior to the people they know and feeling lonely more often than did the norm and the females with GR, and especially more often than the non-growth retarded sample.  Yet, it should be noted that the majority  of the adolescents in all groups, including the growth retarded males and females, highly endorsed that they felt happy most of the time and enjoyed l i f e (see Appendix A).  The findings for the growth retarded  males with IBD are conflicting and therefore, any inferences that may be speculated on about the effects of GR on this sample's emotional tone are unsupportable.  These findings support those of another study  70 investigating the self-image of growth retarded or chronically physically i l l adolescents with GR (Landon et a l . , 1980) perhaps suggesting that there may be some evidence to propose that health professionals working with growth retarded males should be alert for maladjustment in emotional tone among this group of individuals. Body and Self Image.  Comparisons of the three groups' standard  score means for body and self image (see Table 17) and percent endorsements of subscale-specific items revealed that the IBD subgroup with GR is considerably less well-adjusted than the normative sample and especially less well-adjusted than the non-growth retarded subgroup in this Table 17 Normative Sample's and IBD Subgroups' Standard Score Means for Body and Self Image by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Body and self image Males & females  49.60  1385  52.01  13  41.42  11  Males  49.05  585  60.11  6  40.84  7  Females  50.00  800  45.06  7  42.42  4  71 subscale.  However, the females in the non-growth retarded subgroup also  revealed less adjustment than females in the normative sample but better adjustment than did females in the subgroup with GR (see Appendix A). To be more specific, females with GR revealed poor adjustment in 3 of the 9 items specific to this subscale.  They reported themselves as  feeling strong and healthy less often, and being worried about their health in the past year and believing that others see them as being poorly developed more often, than did the normative and non-growth retarded samples.  However, the non-growth retarded females reported  feeling proud of their bodies less often than all the other study participants. Males with growth retardation revealed considerable lesser adjustment in 3 of the 9 items in the body and self image subscale. They more often thought they were not the person they would like to be and more frequently felt ugly and unattractive than all the other subjects did.  They also felt less strong and healthy than did the  normative and non-growth retarded samples. The entire sample of non-growth retarded and especially growth retarded adolescents reported being worried about their health in the past year considerably more often than the norm.  In addition, the  entire growth retarded sample reported feeling strong and healthy considerably less often than the normative and non-growth retarded samples.  Nevertheless, both the males and females with GR reported  being proud of their bodies and being somewhat satisfied with the recent  72  changes in their bodies as often as their normative counterparts did, the males reporting pride in their bodies considerably more often than the females (see Appendix A).  The findings suggested that both IBD  subgroups are clearly more concerned about their health than the norm and that is understandable considering the nature of the chronic illness they must live with.  It is also understandable that those with  GR viewed themselves as less well and whole than the normative and non-growth retarded adolescents did, although they did not report significantly less pride in and satisfaction with their bodies than the normative sample.  That the males with GR were clearly less happy with  their physical appearance and the person they are than were the female and all other male subjects, might be a reflection of the effects of growth retardation, a generally conspicuous characteristic in the male. It has been suggested that there would likely be impairment of the self-image among those in whom there existed a social stigma that was easily noticed (Offer et a l . , 1984a).  Yet, even though the data  reflected considerable sensitivity to body impairment among the females with GR, the data also might suggest that these females were more confident about their appearance and more satisfied with the person they are than were the males with GR.  This finding may be explained by the  general acceptance by society of small stature and size in females and by the greater f a c i l i t y with which females are able to disguise abnormally short stature and small physical dimensions.  These findings  support those general findings of other studies investigating the  73 self-image of adolescents who have been documented with having GR, some of whom also have physical illnesses (Landon et a l . , 1980; Mitchell, Joyce, Johanson, Libber, Plotnick, Migeon & Blizzard, 1986). Perception of the Social Self Social Relationships.  Comparisons of the three groups' standard  score means for this subscale (see Table 18) and percent endorsements of subscale-specific items suggested that both IBD subgroup samples reported equivalent or notably better adjustment than the norm in social relationships.  The males more often endorsed that they usually f e l t out  of place at picnics and parties than the members of all other groups Table 18 Normative Sample's and IBD Subgroups' Standard Score Means for Social Relationships by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Social relationships Males &. females  50.38  1385  61.46  13  49.62  11  Mai es  50.94  585  66.33  6  48.48  7  Females  49.96  800  57.29  7  51.61  4  74  perhaps indicating some degree of social self-consciousness. The growth retarded adolescents, especially the females, reported becoming terribly upset i f others disapproved of them, perhaps providing some evidence of fear of rejection by others.  This particular result was also somewhat  evident in the non-growth retarded females (see Appendix A). The findings suggest that the IBD adolescents with growth retardation perceived themselves to be as well-adjusted in their interpersonal relationships as the norm but not as highly adjusted as the non-growth retarded sample.  All of the IBD adolescents indicated  their sociableness, and their willingness and ability to form friendships.  They reported that they looked forward to and enjoyed  social opportunities and occasions. The male growth retarded samples in another similar study of adolescent self-image reported lesser adjustment in this subscale than their normative sample.  The males in these samples had either cystic  fibrosis or pubertal delay as their overriding diagnosis suggesting perhaps other factors that may be influencing their sociability (Landon et a l . , 1980).  In addition, Mitchell et a l . ' s (1986) male growth  retarded sample also reported finding social relationships with peers of both sexes to have been inadequate. Morals.  Comparison of the three groups' standard score means for  the morals subscale (see Table 19) and percent endorsements of subscale-specific items revealed considerably better adjustment among the IBD adolescents with GR than the norm and somewhat better adjustment  75 Table 19 Normative Sample's and IBD Subgroups' Standard Score Means for Morals by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Morals Males & females  49.98  1385  52.77  13  55.38  11  Males  50.01  585  55.14  6  51.79  7  Females  49.96  800  50.75  7  61.68  4  among the growth retarded sample than the non-growth retarded IBD adolescents.  No subgroups within any of the samples studied revealed  notable poor adjustment in any of the items comprising this subscale. The IBD sample with GR was better adjusted than the normative group in 6 of 10 subscale-specific items and equally adjusted in another 2 items in this subscale. The data suggest that the IBD adolescents with GR may have a considerably more wel1-developed sense of duty, responsibility and concern for others than the normative and the non-growth retarded sample in general, although the non-growth retarded males demonstrated better adjustment than the growth retarded males in this subscale.  The results  76  suggest that the growth retarded sample are truthful, altruistic and trusting.  They perceived themselves to take responsibility for their  actions and to believe in fair play and the importance of good sportsmanship. The investigator speculates that the sample with GR may feel more vulnerable than others, with respect to the exchange of principles of fair play among individuals, perhaps because of limitations rendered them by their illness and its manifestations, such as GR. The investigator postulates that vulnerability may in part account for their heightened moral sensitivity and regard for others. Landon et a l . ' s (1980) general findings for their cystic fibrosis sample are concordant with those of this investigation.  However, their  specific findings indicated their pubertally and/or growth delayed male sample was less adjusted than the norm with respect to moral values and standards. Vocational and Educational Goals.  Comparisons of the three groups'  standard score means for this subscale (see Table 20) and the percent endorsements of subscale-specific items revealed somewhat poorer adjustment among growth retarded males than among most other subjects. However, this poorer adjustment was demonstrated subscale-specific items.  in only 2 of the 10  To be specific, percent endorsements of items  revealed that this subgroup felt that working was too much of a responsibility for them and reported that school and studying meant very l i t t l e to them more often than did the other males and most of the  77 Table 20 Normative Sample's and IBD Subgroups' Standard Score Means for Vocational and Educational Goals by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Vocational and educational goals Males & females  49.99  1385  52.20  13  51.38  Males  50.00  585  56.68  6  46.73  Females  49.99  800  48.36  7  59.51  female subjects in the study.  The ratio of older males to younger males  in the growth retarded subgroup was 6:1.  Half of the older males had  completed their secondary school education and were working full  time.  This factor may have affected their responses to these items potentially skewing scores so that a true indication of self-perception was not rendered, particularly with respect to the school and studying item. However, i f the respondents' scores for these items were a true indication of self-perception, Offer et a l . (1981a) suggest that physically i l l adolescents such as these may be demonstrating an awareness of their real limitations in the workplace.  In addition,  78 females in the non-growth retarded sample reported they felt that working was too much of a responsibility for them more often than did the females in the other samples (see Appendix A). The findings suggest that the adolescents with GR are somewhat more well-adjusted than the norm and almost as well-adjusted as the non-growth retarded sample with respect to the accomplishment of educational tasks and planning for a vocational future.  The  investigator speculates that the data may suggest somewhat of a trend among the adolescents with IBD towards their feeling that work is too much of a responsibility for them.  The investigator cautiously  interprets this data to suggest that these individuals may be indicating their concerns about an inability to f u l f i l l  normal employment  requirements because of the nature of their i l l n e s s , an interpretation that requires further investigation. Perception of the Sexual Self Sexual Attitudes.  Comparisons of the three groups' standard score  means for this subscale (see Table 21) and percent endorsements of subscale-specific items revealed that the IBD females with GR are considerably less well-adjusted than any other group or subgroup in this study with respect to their feelings, attitudes and behavior towards the opposite sex.  The females with GR revealed notable lesser adjustment  than the norm in 6 of 10 items and notable lesser adjustment than the subjects without GR in 4 of the 10 items specific to this subscale. For  79 Table 21 Normative Sample's and IBD Subgroups' Standard Score Means for Sexual Attitudes by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Sexual attitudes Males & females  50.00  1385  56.26  13  36.39  11  Males  49.99  585  63.96  6  44.21  7  Females  50.01  800  49.67  7  22.69  4  example, they reported that they thought about sex less often and that thinking or talking about sex frightened them more than the other subjects did, including the males with GR.  The females also reported  thinking that boys/girls found them attractive less often than the other subjects did.  In addition, 50% of the IBD females with GR felt it was  hard for a teenager to know how to handle sex in a right way (endorsed by 71% of the non-growth retarded females) and perceived themselves to be sexually way behind (endorsed by 57% of the males with GR; see Appendix A).  None of these females endorsed that sexual experiences  gave them pleasure.  Three females in the IBD subgroup without GR  omitted answering this last item.  The males in the IBD subgroup with GR  80 reported that they felt they were sexually way behind more often and indicated that sexual experiences gave them pleasure less often than did the normative and non-growth retarded males (see Appendix A). The findings suggest that the IBD adolescents without GR are more open to their sexuality than the norm and certainly more so than the growth retarded sample.  The data also suggest that the IBD females and  to some extent the males with GR are considerably more conservative about their sexuality than the other subjects.  However, the small  sample sizes of females and males with GR in this study requires that findings about this sample be interpreted cautiously and judiciously. Therefore, the investigator interpreted the data to imply that the females with GR, and to a certain extent the males with GR, tended to perceive themselves as delayed in development with respect to their sexuality and their experiences and behavior towards the opposite sex. For example, more than half of the growth retarded adolescents reported feeling that they were sexually way behind and a l i t t l e more than a third indicated that sexual experiences gave them pleasure.  The  investigator speculates that this may indicate that they are not as sexually active as the adolescents in the other groups, particularly the females with GR who were of a young age (see Table 1, p. 35).  However,  a large percentage of the growth retarded adolescents, as high a percentage as in the other groups, did feel that having a boyfriend/girlfriend was important to them indicating their interest in or concern about functioning and dealing with their emerging sexuality  81 in a way that is considered appropriate by their peers and society in general. The growth retarded males, but not the females, in Landon et a l . ' s study (1980) demonstrated significant maladjustment with respect to their perceived attitudes, feelings and behavior towards the opposite sex. Perception of the Familial Self Family Relationships.  The participant groups' standard score means  for this subscale (see Table 22) and percent endorsements of subscale-specific items suggested that only the IBD males with GR revealed less adjustment than the other subjects in the area of family relationships.  The data showed that the males with GR reported that  they usually felt they were a bother at home, tried to stay away from home most of the time and felt their parents would be disappointed in them in future, notably more often than the other male and female study participants did.  They also reported they felt that their parents were  satisfied with them most of the time less often than the other participants did (see Appendix A). The investigator speculates that these findings suggest that the males with GR, yet not the other subjects, may have some concerns about their contributions to their families' functioning and that they may feel themselves to be somewhat of a burden to their families.  The  investigator postulates that these individuals may have these concerns and feelings because of the effects their illness may have on their  82 Table 22 Normative Sample's and IBD Subgroups' Standard Score Means for Family Relationships by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Family relationships Males & females  49.98  1385  56.77  13  50.03  Males  49.99  585  58.15  6  43.57  Females  49.98  800  55.58  7  61.33  families, generally, or because of a lack of confidence in or general concerns about their future self-sufficiency capabilities as adults. However, all study participants highly endorsed items indicating that they felt they would be a source of pride to their parents in the future, could count on their parents most of the time, and had a part in making family decisions.  They also highly endorsed that their parents  got along well with each other most of the time, that their parents were right when strict even i f the respondents got angry, and that their own families when they will have them would be similar to their present families.  The results did suggest that, in general, the emotional  atmosphere in the homes of the IBD adolescents with GR was equivalent to  83 that of the normative sample but not as healthy an atmosphere as that in the homes of the non-growth retarded sample.  These results generally  concur with those of another, similar adolescent self-image study although the growth retarded males' scores in this study were more concordant with the norm than were those in this investigation (Landon et a l . , 1980). Perception of the Coping Self Mastery of the External World.  Comparisons of the three groups'  standard score means for this subscale (see Table 23) suggested less adjustment than the norm among only the males in the IBD subgroup with GR.  Comparisons of percent endorsements of subscale-specific items  revealed that males with GR reported considerable lesser adjustment than the norm in only one item specific to this subscale.  Seventy-one  percent of these males reported that they repeated things continuously to be sure they were right compared to 45% of the normative male sample and 67% of the male non-growth retarded sample who did so.  They  revealed less adjustment than the other males in two other items. Seventy-one percent of the males with GR reported they could learn almost anything i f they put their minds to it compared to the higher endorsements made by the other subjects.  Twenty-nine percent of the  males with GR stated they were fearful of growing up compared to the lower endorsements made by the other male subjects (see Appendix A.) The investigator speculates that these findings may suggest that the IBD adolescents without GR perceived themselves to be more adaptable  84 Table 23 Normative Sample's and IBD Subgroups' Standard Score Means for Mastery of the External World by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Mastery of the external world Males & females  49.89  1385  54.36  13  45.73  Males  49.73  585  54.97  6  43.06  Females  50.00  800  53.85  7  50.41  to their immediate environments and capable of finishing tasks than did the normative and especially the growth retarded male samples.  The  investigator postulates that the results also may suggest that, although the growth retarded males felt that they could function effectively in their immediate worlds in a general sense, they also demonstrated a tendency to feel fearful of growing up and to feel less fully confident in their learning a b i l i t i e s , perhaps indicating some reservations about their future capabilities and self-sufficiency. Another similar study has shown that the standard scores of their growth retarded male samples were more concordant with their normative  85 sample for this subscale than was the present study's male growth retarded sample's scores with its normative sample (Landon et a l . , 1980). Psychopathology.  Comparisons of the three groups' standard score  means for this subscale (see Table 24) suggested less adjustment than the normative sample only among the males in the IBD subgroup with GR. Comparisons of percent endorsements of items revealed that in only 3 of the 14 items specific to this subscale did the males with IBD and GR reveal lesser adjustment than the normative and non-growth retarded samples.  The growth retarded males stated more often, that they felt  empty emotionally most of the time and had a strange and funny feeling when they entered a room, than the other subjects did (see Appendix A). The findings suggest that the non-growth retarded IBD adolescents demonstrated fewer signs and symptoms of psychopathology than did the normative and growth retarded samples.  The growth retarded and  normative samples revealed almost equal adjustment overall in this subscale.  The growth retarded males did report feelings of emotional  emptiness and general self-consciousness more often than the other study participants, leading the investigator to speculate that the males with GR may be more bothered or upset about their illness or its manifestations, such as GR, than the other samples may be.  These  findings are concordant with those of another similar study concerning the self-image of growth retarded adolescents (Landon et a l . , 1980).  86 Table 24 Normative Sample's and IBD Subgroups' Standard Score Means for Psychopathology by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Psychopathology Males & females  49.98  1385  55.16  13  49.75  Males  49.99  585  53.11  6  46.05  Females  49.97  800  56.93  7  56.22  Superior Adjustment.  Comparisons of the three groups' standard  score means for this subscale (see Table 25) and percent endorsements of subscale-specific items revealed that the IBD subgroups compared favorably with the normative sample, their scores suggesting better than average adjustment in this subscale. The data suggest that the IBD adolescents with GR cope with themselves, significant others and their worlds, almost as well as the non-growth retarded sample and better than the normative sample. The investigator postulates that these findings are an indication of the overall strength the IBD adolescents possess, having had to cope with a  87 Table 25 Normative Sample's and IBD Subgroups' Standard Score Means for Superior Adjustment by Gender  Groups  Subscale  Normative  n  IBD without GR n  IBD with GR n  Superior adjustment Males & females  49.96  1385  54.16  13  53.24  11  Males  49.99  585  56.78  6  49.98  7  Females  49.94  800  51.92  7  58.94  4  debilitating chronic illness and the effects of its manifestations on their social, scholastic, vocational and family lives.  The findings of  another study investigating the self-image of growth retarded adolescents indicated that both males and females were less adjusted than the norm in this aspect of the self (Landon et a l . , 1980). Summary Although the sample sizes within the IBD subgroups were small, they were almost equal in the distribution of numbers of subjects and in the distribution of males (6:7) females (7:4).  and less equal in the distribution of  Despite the small sample sizes, the findings did suggest  similarities and differences between the growth retarded and non-growth  88 retarded adolescents and between these two groups and the normative sample, with respect to self-image. The non-growth retarded sample perceived themselves to be better adjusted than the norm in every subscale and better adjusted than the growth retarded samples in every subscale but morals.  They perceived  themselves to be able to control their impulses and delay gratification, to experience emotional harmony and stability, to adjust to their bodily changes successfully and feel confident about their bodies, to develop and maintain interpersonal relationships, to demonstrate a sense of duty, responsibility and concern for others, to learn satisfactorily and plan for a vocational future, to be comfortable and open about their emerging sexuality, to get along well with their families and to effectively adapt to and cope with themselves, significant others and situations in their worlds, better than the other samples did.  The  investigator speculates that the presence of inflammatory bowel disease, its manifestations and its treatment does not appear to have affected negatively the self-image of these individuals who are also having to cope with the accomplishment of the developmental tasks expected of them in this maturational  l i f e stage.  Rather, i f the existence of this  chronic illness has had an effect on their self-image, it has been positive.  The investigator proposes that the findings suggest that  these individuals have met the challenge of dealing with this illness and its ramifications with strength and optimism rather than with a lack  89 of confidence and with overwhelming fear, doubt and depression and the blaming of others for their health-related d i f f i c u l t i e s . The IBD adolescents with GR have notably less positive self-images than the non-growth retarded sample in five of the 11 subscales measured.  They perceived themselves to have experienced emotional  harmony and stability, adaptation to and confidence in their bodily changes and their bodies, confidence in their interpersonal relationships and capacity for empathy with others, confidence in and competence with their emerging sexuality and adaptation to frustration in their immediate environment, less often than have the non-growth retarded sample.  However, they have revealed their sense of morality to  be more wel1-developed than did the normative sample and the non-growth retarded females.  The investigator postulates that the differences  between the non-growth retarded and growth retarded IBD samples' scores suggest that GR, a manifestation of IBD, may have a negative effect on the development of a positive self-image in these adolescents. The negatively affected aspects of the self could be considered the most logical areas to be affected in the adolescent with a visible physical social stigma such as GR. In comparison to the normative sample, the findings suggest that IBD adolescents with GR are notably more maladjusted with respect to their adaptation to and self confidence in their developing bodies and their openness about their emerging sexuality.  In addition, the  findings suggest that the males with GR may be somewhat more maladjusted  90  in their emotional harmony, their ability to successfully cope with their immediate environment and their relations with their family than the norm and the females with GR. The differences between the growth retarded and the normative samples and the differences between the growth retarded and the non-growth retarded samples, when reviewed overall, suggest that, a)  the presence of IBD alone does not appear to have a negative  effect on the self-image of the adolescents in this study and i f anything, has a positive effect. b)  the presence of GR in these adolescents may negatively affect  the self-image.  The growth retarded females viewed themselves as less  well and whole than the other samples.  However, the non-growth retarded  IBD females were as worried about their health as the growth retarded IBD females.  The investigator considers this to be a legitimate concern  among chronically physically i l l  individuals.  In addition, that  individuals who are not growth retarded do not appear to see themselves to be as weak and unhealthy as the growth retarded individuals do, is also an expected perception.  The growth retarded females also viewed  themselves to be delayed in their development with respect to their sexuality and behavior with the opposite sex when compared to the other study samples.  This may suggest they are less active sexually than the  other samples, a finding perhaps attributable to their GR, and their ages and a potential resultant lack of confidence in their physical selves and their sexuality.  91 The males with GR presented themselves as being more emotionally labile than the other subjects, reporting that they felt lonely and inferior to others but also that they felt happy most of the time and able to enjoy l i f e .  The investigator speculates that perhaps the  presence of GR among this sample has resulted in the generation of negative thoughts about self and a lack of confidence in initiating peer relationships but that this has not interfered or they deny it has interfered with their basic capacity to be happy and enjoy l i f e .  These  males also reported feeling less strong and healthy and less happy with their physical appearance and with the person they were than did all other subjects perhaps again reflecting the effects of the presence of GR, a speculation of the investigator. The growth retarded males also viewed themselves as being delayed in their development with respect to their sexuality and their experiences with the opposite sex perhaps an indication of greater sexual inactivity in this group than among the subjects in the normative and non-growth retarded samples.  The investigator proposes that the  aforementioned speculation about the sample's sexual activity may be a reflection of the effects of GR on their self-confidence in relating with the opposite sex.  The investigator postulates that, given the  number and complexity of developmental tasks presented by adolescence, it is not surprising that the growth retarded IBD sample revealed disturbances in their self-images, particularly in the areas discussed.  92 c)  the presence of GR appears to have affected the self-image of  the males more negatively than the females. expected finding.  This may be considered an  The investigator suggests that the theory that this  usually visible stigma is less socially acceptable and less easily disguised in the male may be demonstrated in and supported by the results of this investigation.  93  CHAPTER FIVE  Summary, Conclusions and Recommendations  Summary and Conclusions  Adolescence is a critical l i f e period with respect to the development of the self.  Adolescent perception of self is influenced by  the dramatic physical, social and emotional changes characteristic of this maturational  l i f e period.  The way adolescents see, think and feel  about themselves, or their self-image, is formed , to a large extent, as a result of how successfully they view themselves adapting to these changes and accomplishing the developmental tasks expected of them by society.  The literature and the investigator's clinical experience have  shown that the nature of IBD, its treatment and its manifestations, such as growth retardation, may have a conceivably disruptive effect on the l i f e s t y l e , social and family relationships and education and career development of a notable number of adolescents, potentially  affecting  their perceptions of their functioning in these areas and therefore, their perceptions of themselves.  These observations and postulations  led the investigator to question the effect of IBD in general, and growth retardation in the IBD adolescent in particular, on the self-image.  Prior research has examined the variables of adolescence,  chronic illness and growth retardation and their effect on single or  94 multiple aspects of self-image.  In an attempt to extend the existing  knowledge of the self-image of chronically, physically i l l adolescents a descriptive-comparative study was conducted to describe the self-image of adolescents with IBD and to compare the similarities and differences in self-image between the IBD adolescents with and without growth retardation in order to determine the effect of IBD and growth retardation on the self-image. A multidimensional conceptualization of self-image as defined by Offer (1969), Offer and Howard (1972) and Offer et a l . (1981a, 1982a) was the framework on which the study was grounded.  Offer et a l . (1981a,  p. 17) define self-image as "the phenomenal self, . . . the me as experienced or perceived by the person whom we seek to know."  Offer  (1969) conceptualized the self-image of the adolescent as consisting of five selves, the psychological, social, sexual, familial, and coping selves. These five major selves are further categorized into 11 separate content areas representing the 11 subscales in the Offer Self-image Questionnaire (OSIQ) for adolescents.  The three subscales comprising  the psychological self measure adolescents' concerns, feeling, wishes and fantasies, the subscales representing the social self measure perception of interpersonal relationships, moral attitudes and vocational and educational goals, the sexual self subscale measures feelings, attitudes and behaviors towards the opposite sex, the familial self subscale measures the emotional atmosphere in the home and the  95 three subscales comprising the coping self measure adolescents' perceptions of their ability to cope with or adapt to themselves, significant others and their worlds. Twenty-four subjects, who were attended by two physicians at the British Columbia Children's Hospital, agreed to participate in the study.  They ranged in age from 12 to 20 and were unevenly distributed  for age, gender, type of IBD, severity of illness at the time of the study, past history of bowel surgery, and presence of ileostomy/ colostomy.  The 24 eligible subjects formed three groups, those with IBD  and growth retardation (n=ll) those with IBD without growth retardation (n=13) and the former two IBD subgroups combined (N=24).  The findings  for the three groups were each compared with Offer et a l . ' s (1981a) normative sample and the IBD subgroups' findings were also compared with each other's. overall.  As well, the findings for females and males were compared  Group and subgroup comparisons were made using summary  statistics, the groups' and subgroups' standard score means for subscales, and their percent endorsements of selected subscale-specific items. The data were collected using the Offer Self-image Questionnaire for adolescents.  The questionnaires were mailed to the subjects and  returned to the investigator by mail.  Ethical considerations were  maintained. Eighteen of the adolescents with IBD had Crohn's disease, 5 had ulcerative c o l i t i s and one was diagnosed with having unclassified IBD.  96  Eleven of the 24 adolescents with IBD had growth retardation, all of them with Crohn's disease.  As a result of the small numbers of subjects  in the IBD group and subgroups and because the subjects were unevenly distributed for the variables listed above, the findings were interpreted with caution. Two-tailed t-tests performed on the OSIQ's 11 subscale standard score means and standard deviation scores indicated no differences in self-image between the normative and IBD samples and between the IBD subgroups and normative sample.  However, the IBD females reported more  body image concerns, not unexpectedly, primarily related to concerns about health, and more concerns about their sexuality and sexual maturation, than the other groups investigated.  These findings were  revealed in the examination and comparison of the participant groups' percent endorsements of selected items specific to the 11 subscales. Comparisons of percent endorsements of selected subscale-specific items indicated notable differences in self-image between the normative sample and the IBD samples with and without growth retardation.  The  findings suggest that the presence of IBD alone does not appear to have a negative influence on adolescent self-image and that i f it does have an influence it must be positive.  This postulation is made because the  non-growth retarded adolescents revealed considerably better or somewhat better adjustment than the norm in every subscale measured and considerably better adjustment than the growth retarded sample in every subscale but three.  97 Percent endorsements of subscale-specific items do suggest that growth retardation may have a negative influence on the self-image of adolescents with IBD.  The male adolescents with growth retardation  revealed more self-image disturbances than the other samples especially the non-growth retarded sample with respect to their body and self image, sexual attitudes and behavior, emotional harmony, family relations and adaptability to stress, perceptions.  The females with  growth retardation revealed greater self-image disturbances than all other study participants with respect to their confidence in their sexuality and their sexual maturation perceptions.  Their perception of  their body image was almost as poor as that of the growth retarded males and poorer than all other subjects' although the non-growth retarded females revealed self-image disturbance in this subscale as well. The investigator speculates from the data that the presence of growth retardation may have a greater negative effect than IBD or is the factor negatively affecting perception of self among these adolescents. The data reveal that where the growth retarded physically i l l adolescents differ from the normals and those without growth retardation is where they might be expected to differ.  The findings also suggest  that growth retarded males have more self-image disturbances than the females, leading the investigator to speculate that this may be so because short stature and delayed physical development are generally less socially acceptable in the male (Offer et a l . , 1984a).  98 Recommendations for Practice The findings of this study have shown that for this sample of adolescents, IBD may have a negative effect on the body image and sexual maturation of the females.  However, Offer et a l . (1981a) also found  normative females revealed poorer body image and less openness to their sexuality than the males.  This may suggest that the poor self-images of  IBD females, with the respect to body image and sexuality, may not necessarily be the effect of the IBD but may reflect normal female concerns and perceptions during adolescence.  The implication is that  female adolescents, including those with IBD, need the recognition, understanding and sensitivity of friends, family, teachers and health care professionals regarding their concerns in these areas, as well as their help to develop more positive body images and confidence in their sexuality.  Of all the health professionals, nurses in hospitals are  often in the most proximal, lengthy and intimate daily contact with these adolescents when they are hospitalized or keeping clinic appointments.  Armed with the knowledge that females (and males) with  IBD may have negative body images and concerns about their sexuality and educated in the use of therapeutic communication techniques, nurses are in an optimal position to develop a rapport with these adolescents on an individual basis.  Nurses should utilize opportunities to promote open  discussion that may lead to the development of a more positive body image and increased confidence in one's sexuality in the adolescent experiencing disturbances in these measures of self-image.  99 This study's findings have also suggested that growth retardation in adolescents with IBD may have a considerable negative effect on self-image in a number of areas:  body image, emotional harmony, ability  to cope with frustrations in the immediate environment, relations with family and sexual maturation, in descending order of degree of negative effect in the males and sexual maturation and body image, in descending order of degree of negative effect in the females.  A significant  correlation has been found between the positive self-image of adolescents and mental health, physical health, positive feelings and attitudes towards family, a well-developed capacity for empathy with others, a well-functioning coping system and emotional harmony (Offer et a l . , 1981a).  Therefore, it is important for the health care  professionals who most often work with these teenagers, who are chronically, physically i l l and have growth retardation, an often visible and stigmatic manifestation of IBD, to recognize that these males and females may have similar and different  self-image  disturbances. Nurses, as previously mentioned, are often in the best position to develop a rapport with these teenagers in order to accurately understand how they think and feel about themselves in relation to the specified self-image disturbances.  To facilitate the development of an improved  self-image in affected adolescents, nurses in hospitals and in the community can relay pertinent information to others who are significant in the lives of these adolescents and who may in some way be affecting  100 their self-image development.  Nurses can assist adolescents to discuss  their self-image concerns and issues with significant others, such as parents, teachers and peers who may affect how these adolescents function day-to-day and how they view themselves as a result of their level of functioning. The involvement of several health disciplines in the care of IBD adolescents indicate the need for a multidisciplinary and team approach that individualizes the assistance provided in helping those adolescents with self-image disturbances.  These professionals could develop a  counselling program geared to the general self-image disturbances experienced by IBD adolescents with growth retardation but individualized to the specific needs of the adolescent and provided in a non-threatening private setting. The establishment of same-sex peer support groups may be particularly useful for growth retarded male and female adolescents experiencing sensitive self-image disturbances.  The support groups may  be particularly effective i f led by a qualified older teenager or young adult with IBD and growth retardation who has endured and overcome similar self-image disturbances.  These implications for practice are  supported by the suggestions for the care of chronically i l l adolescents made in Buhlmann and Fit^patrick's article (1987). The findings also indicate that there is a need for community health nurses to establish a vehicle for communicating general information about the self-image concerns of IBD adolescents with growth  101 retardation to other groups whose individuals are significant persons in the lives of these adolescents such as parents, teachers, hospital tutors and guidance counsellors.  This vehicle for communicating  information is viewed as necessary for the promotion of their knowledge, understanding and sensitivity of these adolescents.  The investigator  suggests that this information will guide them with respect to when and where to gear their counselling, support and encouragement of these adolescents or, simply, their empathy.  For example, parents would be  able to use the knowledge that IBD male adolescents with growth retardation may feel they are a burden to their families to initiate communications and potentially improve family relations.  Research has  shown that as communications between an adolescent and parent improves, the adolescent's self-image improves (Offer, Ostrov & Howard, 1982b). Recommendations for Research For the results of this study to be more validly generalizable to this population of adolescents, replication of this study using random sampling of a larger sample is indicated.  Because random sampling  methods are not always possible due to the relatively small size of the population of IBD adolescents, it is indicated, at the least, that larger numbers of subjects be obtained for the growth retarded and non-growth retarded IBD subgroups and that they be more evenly matched for sex, age, type of IBD and other confounding factors such as incidence of bowel surgery, presence of an ileostomy/colostomy and severity of illness at the time of participation in the study.  In  102 addition, larger numbers of study participants in the IBD group and subgroups would allow for the examination of differences and similarities in self-image among younger and older male and female categories.  A replication study that has taken into account these  suggestions may lend more credence to or deny the nature of the effect of IBD and growth retardation on the self-image of adolescents as found in this investigation.  Results of the application of these suggestions  may also lend support to or refute a) hypotheses such as those proposing that growth retarded males have more self-image disturbances than growth retarded females or normal height adolescents and do so because of the social unacceptability of short stature in males and b) hypotheses suggesting that IBD is a psychosomatic illness or that individuals with IBD tend to become psychologically impaired as a consequence of the disease.  The inclusion of a normative sample obtained by the  investigator and a sample of growth retarded but otherwise healthy males and females to be utilized as a control group in the examination of the effect of growth retardation on self-image would also improve the study and lend evidence to or refute hypotheses such as these and the study's findings. Random sampling of a larger IBD sample and an inclusion of the investigator's own normative sample would also allow for the availability of a complete l i s t of raw and standard scores for all study samples and therefore, for more appropriate and valid use of tests of difference such as the t-test, in this study.  103 Although the study's findings suggest that adolescents with IBD have positive self-images and those with growth retardation may have a number of self-image disturbances, a qualitative study investigating the experience of living with IBD, in terms of self-image, may uncover not only the phenomenology of adolescent l i f e with IBD but also particular thematic self-image disturbances specific to male, female, growth retarded and non-growth retarded individuals with IBD.  This kind of  study may also validate or deny this study's findings regarding the self-image of adolescents with IBD, that i s , that it is the growth retardation and not IBD alone that appears to lead to self-image disturbances among specific groups within this population.  104 References Adams, J . A . , & Weaver, S . J . (1986). Self-esteem and perceived stress in young adolescents with chronic disease. Journal of Adolescent Health Care, 7.(3), 1873-1877. American Psychological Association. (1983). Publication manual of the American psychological association (3rd ed.J] Washington, DC: Author. Barnes, H. V. (1975). The problem of delayed puberty. of North America, 59(6), 1337-1347.  Medical Clinics  Brown, C. J . (1982). Hospital management of chronic illness in adolescence: A developmental model. Journal of Chronic Disease, 35, 659-667. Buhlmann, U., & Fitzpatrick, S.B. (1987). Caring for an adolescent with chronic illness. Primary Care, JL4_( 1), 57-68. Coche, E . , & Taylor, S. (1974). Correlations between the Offer Self-image Questionnaire for adolescents and the Minnesota Multiphasic Personality Inventory in a psychiatric hospital population. Journal of Youth and Adolescence, _3 (2), 145-152. Cronbach, L . J . (1970). Essential psychological testing (3rd ed.). New York: Harper and Row. Crozier, A. J . (1982). The impact of ulcerative c o l i t i s and its treatment on adolescent body image. Unpublished masters thesis, University of Toronto, Toronto. Daniel, W. A. (1975). An approach to the adolescent patient. Medical Clinics of North America, 59(6), 1281-1287. Davidson, A.G.F. (1984, November). Children with IBD. Lecture presented at the annual meeting of the Richmond Chapter of the Canadian Foundation for I l e i t i s and C o l i t i s , Vancouver, B.C. Dudley, H.K., Craig, E.M., & Mason, J.M. (1981). The measurement of adolescent personality dimensions. The MMPI and the Offer Self-image Questionnaire for adolescents. Adolescence, 16 (62), 453-469. 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Developmental tasks and education (3rd ed.). New York: David McKay. Hjorth, C. (1980). The self-concept, self-image and body image of the physically abused adolescent. Unpublished doctoral dissertation, California Graduate Institute, Los Angeles. Hollingshead, A.B. (1975). Four factor index of social status. Connecticut: Department of Sociology, Yale University. Houk, N. G. (1980). The disabled adolescent: Promoting a positive self-concept by achievement of developmental tasks. In P. L. Chinn & K. B. Leonard (Eds.), Vol. 3, Current Practice in Pediatric Nursing (pp. 191-205). St. Louis: C. V. Mosby. Johnson, W. R., Hughes, E. S . , McDermott, F. T., Polglase, A. L . , & Pi h i , E. A. (1982). Inflammatory bowel disease: Where are we? The Medical Journal of Australia, 1(5), 226-229. Kellerman, J . , Zeltzer, L., Ellenberg, L., Dash, J . , & Rigler, D. (1980). Psychological effects of illness in adolescence. 1: Anxiety, self-esteem, and perception of control. The Journal of Pediatrics, 97_(1), 126-131. Landon, C , Rosenfeld, R., Northcraft, G., & Lewiston, N. (1980). Self-image of adolescents with cystic fibrosis. Journal of Youth and Adolescence, 9(6), 521-528.  106 Leichtman, S. R., & Friedman, S. B. (1975). Social and psychological development of adolescents and the relationship to chronic illness. Medical Clinics of North America, 59(6), 1319-1328. Mitchell, C M . , Joyce, S . , Johanson, A . J . , Libber, S . , Plotnick, L . , Migeon, C . J . , & Blizzard, R.M. (1986). A retrospective evaluation of psychosocial impact of long-term growth hormone therapy. Clinical Pediatrics, 25(1), 17-23. Nelson, R. P. (1984). Political and financial issues that affect the chronically i l l adolescent. In R. W. Blum (Ed.), Chronic illness and disabilities in childhood and adolescence (pp. 1-15~]L Orlando, F l . : Grune/Stratton. Newman, B. M., & Newman, P. R. (1979). An introduction to the psychology of adolescence. Homewood, 111.: The Dorsey Press. Offer, D. (1969). The psychological world of the teenager: normal adolescent boys. New York: Basic Books.  A study of  Offer, D., & Howard, K. I. (1972). An empirical analysis of the Offer Self-image Questionnaire for adolescents. Archives of General Psychiatry, 27, 529-534. Offer, D., Ostrov, E . , & Howard, K. I. (1981a). The adolescent: A psychological self-portrait. New York: Basic Books. Offer, D., Ostrov, E . , & Howard, K. I. (1981b). The mental health professional's concept of the normal adolescent. Archives of General Psychiatry, 38, 149-152. Offer, D., Ostrov, E . , & Howard, K. I. (1982a). The Offer Self-image Questionnaire for adolescents: A manual (3rd edT]^ Chicago: Michael Reese Hospital and Medical Center. Offer, D., Ostrov, E . , & Howard, K.I. (1982b). Family perceptions of adolescent self-image. Journal of Youth and Adolescence, 11, 281-292. Offer, D., Ostrov, E . , & Howard, K. I. (1984a). Body image, self-perception, and chronic illness in adolescence. In R. W. Blum (Ed.), Chronic illness and disabilities in childhood and adolescence (pp. 59-73). Orlando, F l . : Grune/Stratton. Offer, D., Ostrov, E . , & Howard, K.I. (Eds.). (1984b). The self-image of normal adolescents. In D. Offer, E. Ostrov, and K.I. Howard (Eds.), Patterns of adolescent self-image (pp. 5-17). San Franscis"col Jossey-Bass Publishers.  107 Oryboski, J . , & Hillemeier, C. (1980). Inflammatory bowel disease in children. Medical Clinics of North America, 64(6), 1185-1202. Pless, I.B. (1984). Clinical assessment: Physical and psychological functioning. Pediatric Clinics of North America, 3^(1), 33-45. Pless, I. B., & Roghmann, K. J . (1971). Chronic illness and its consequences: Observations based on three epidemiologic surveys. Journal of Pediatrics, 79(3), 351-359.  The  Rankin, G. B. (1981). Crohn's disease: Its recognition and complications. Primary Care: Clinics in Office Practice, 8j2), 309-319. Rosenthal, S. R., Snyder, J . D., Hendricks, K. M., & Walker, W. A. (1983). Growth failure and inflammatory bowel disease: Approach to treatment of a complicated adolescent problem. Pediatrics, 72(4), 481-490. Simmons, R. G . , Rosenberg, F., & Rosenberg, M. (1973). Disturbance in the self-image at adolescence. American Sociological Review, 38, 553-566. Sparacino, L. L. (1984). Psychosocial considerations for the adolescent and young adult with inflammatory bowel disease. Clinics of North America, 19(1), 41-49.  Nursing  Strax, T . E . , & Wolfson, S.D. (1984). Life cycle crises of the disabled adolescent and young adult: Implications for public policy. In R.W. Blum (Ed.), Chronic illness and disabilities in childhood and adolescence (pp. 47-57). Orlando, F l : Grune/Stratton. Tanner, J.M. (1955).  Growth at adolescence.  Toronto:  Ryerson Press.  Tavormina, J . B., Kastner, L. S . , Slater, P. M., & Watt, S. L. (1976). Chronically i l l children: A psychologically and emotionally deviant population? Journal of Abnormal Child Psychology, £ ( 2 ) , 99-110. Wylie, R. C. (1974). of Nebraska Press.  The self-concept (Vol. 1).  Lincoln: University  Zeltzer, L., Kellerman, J . , Ellenberg, L., Dash, J . & Rigler, D. (1980). Psychologic effects of illness in adolescence. II: Impact of illness in adolescents - crucial issues and coping styles. The Journal of Pediatrics, 97(1), 132-138.  108 APPENDIX A Internal Consistency of Each OSIQ Subscale Score for Four Separate Normal Populations Groups Subscale  Younger Males N=326  Older Mai es N=192  Younger Females n=278  Older Females n=154  Psychological Self Impulse Control  .52  .69  .76  .70  Emotional Tone  .40  .79  .78  .81  Body and Self Image  .38  .62  .66  .56  Social Relationships  .61  .76  .78  .71  Morals  .60  .51  .56  .36  Vocat./Educ. Goals  .57  .69  .61  .61  .43  .55  .67  .48  .57  .83  .87  .88  Mastery of External World  .48  .58  .60  .63  Psychopathology  .66  .73  .75  .68  Superior Adjustment  .52  .60  .60  .61  Social Self  Sexual Self Sexual Attitudes Familial Self Family Relationships Coping Self  Note:  Samples were collected in Chicago Suburbs and areas in 1962, 1966 and 1969.  109 APPENDIX A Percent Endorsements of Selected Items for Emotional Tone for Study Groups by Gender Groups Normal *+  Item  IBD subgroups combined * *  M F MF a  23. I feel inferior to most people I know 18 66. I feel so very lonely  16  b  16  15  20  15  54. I am so very anxious  53 52 52  12. I feel tense most of the time  13  M F MF  IBD with GR M F MF  0  0  29  27  0  0  29  18  69 55 63  67 57 62  71 50  64  23 18 21  17 14 15  29 25  27  23 25 24  32. Most of the time I am happy  M F MF  IBD without GR ***  45  41  90  90  92  96  100  100  86  91  92  88  100  100  86  73  68. I enjoy l i f e  83 69 29 45 54 58 38. + et a l . ' s normative sample findings included by permission MyOffer feelings (1981a). are easily *hurt N = 1385; * * 38 N = 24; 52* * * n = 13, * * * * n = 11 Note: M, F and MF refer to males, females and males and females. Indicates that 18% of the males in the normative group answered 1, 2 or 3 on the Likert scale, thereby agreeing with the statement in item #23. Percent endorsement refers to the percent of individuals who agree with the statement in a particular item. a  b  110 APPENDIX A Percent Endorsements of Selected Items for Body and Self Image for Study Groups by Gender Groups Item  Normal *+ M  IBD subgroups combined * *  F MF  M  F MF  IBD without GR *** M F MF  IBD with GR **** M F MF  27. In the past year I have been very worried about my health 21 25  23  31 64 46  33 57 46  29 75  45  99. I feel strong and healthy  86  77 55 67  100 71 85  57 25  45  16  16  36 25  29 23  57. I am proud of my body  78 53  64  85 45 67  100 43 69  71 50  64  90. I frequently feel ugly and unattractive  22 43  34  31 27 29  0 29 15  57 25  45  45  46  71  55  87 85  94. When others look at me they must think I am poorly developed  82. Very often I think I am not at all the person I would like to be 45  38  17  23  50 '27  Ill APPENDIX A Percent Endorsements of Selected Items for a) Social Relationships and b) Vocational and Educational Goals for Study Groups By Gender Groups Item  Normal *+ M F  IBD subgroups combined * * MF  IBD without GR ***  M FHF  IBD with GR ****  M F  MF  M F MF  0  8  57  a) Social Relationships 13. I usually feel out of place at picnics and parties  23  22  31  21  86. If others disapprove of me I get terribly upset  34 44  40  23 64 42  0 57 31  36  43 75 55  b) Vocational and Educational Goals 14. I feel that working is too much responsiblity for me  6  115. School and studying mean very l i t t l e to me  21  7  7  18  15 27 21  0 43 23  29  15  0  29  13  8  0 18  18  112 APPENDIX A Percent Endorsements of Selected Items for Sexual Attitudes for Normal and IBD Samples By Gender Groups Item  Normal *+  IBD subgroups combined * *  IBD without GR ***  M F  MF  M F MF  M F  45  53  36 58  7  7  24  IBD with GR ****  MF  M F MF  57  69  0  45  27 13  14  8  50  18  21  64 38  71  46  50  27  91. Sexually, I am way behind 117. Sexual experiences give me  16 16 16  38 36 38  17 29  23  57 50  55  pleasure  69 54 61  77 36 58  100 57  77  57  0  36  74 74  64 75  57  77  75  73  122. I often think about sex 97. Thinking or talking about sex frightens me 16. It is very hard for a teenager to know how to handle sex in a right way  119. Having a g i r l / boyfriend is important to me  113 Percent Endorsements for Sexual Attitudes Continued Groups Item  Normal *+ M F  77. I think that girls/boys find me attractive  IBD subgroups combined * * MF  61 64  M F MF  55 67  IBD without GR *** M F  MF  57 69  IBD with GR **** M F MF  50  64  114 APPENDIX A Percent Endorsements of Selected Items for Family Relationships for Normal and IBD Samples by Gender  Item  Normal *+ M F  4. I think that I will be a source of pride to my parents in the future 82  IBD subgroups * * combined MF  M F MF  IBD without GR *** M F  MF  IBD with GR **** M F MF  80  85  88  83  85  86  91  6  7  15  17  0  8  29  27  112. Most of the time my parents are satisfied with me 87  86  77  88  100  100  57  73  85. Usually I feel that I am a bother at home  22  23  38  29  33  31  43  27  102. I try to stay away from home most of the time  27  29  62  42  50  38  71  45  15. My parents will be disappointed in me in the future  115 APPENDIX A Percent Endorsements of Selected Items for a) Mastery of the External World and b) Psychopathology for Normal and IBD Samples By Gender  Item  Normal *+  IBD subgroups **combined  M F MF  M F  IBD without GR ***  MF  M  IBD with GR ****  F  MF  M F  71  69  71  92  71  31  29  MF  a) Mastery of the External World 129. I repeat things continuously to be sure that I am right 45  39  19. If I put my mind to it I can learn almost anything 87 128. I am fearful of growing up  19  26  42  69  85  77  23  23  64  26  67  67  88  83  29  17  43  50  64  82  25  27  b) Psychopathology 45. I feel empty emotionally most of the time 21  19  38  21  33  15  43  27  108. When I enter a new room I have a strange and funny feeling 34  33  54  38  33  23  71  55  116 APPENDIX B LETTER OF EXPLANATION TO THE HOSPITAL  Dear I am a registered nurse currently enrolled in the graduate program at the University of British Columbia, School of Nursing. I have elected to complete a research study in partial fulfillment for my Master of Science in Nursing degree. The purpose of my investigation is to determine the impact of inflammatory bowel disease on adolescent self-image. Please find enclosed a copy of my protocol which outlines the rationale and instrument for my study. I am writing this letter to request permission to select adolescent patients with inflammatory bowel disease, registered with the gastroenterology clinic and who are patients of Dr. Davidson and Dr. Hassall, to be included in this study. I realize that I will be requested to submit my research proposal to a research committee for approval. Presently though, I require a letter indicating the possibility of permission to use B. C. Children's Hospital for my research, which must accompany my proposal to the U.B.C. Research Ethics Committee. I realize permission is conditional upon the approval of my proposal by the Ethics and Research Committees at U. B. C. and B. C. Children's Hospital. Upon completion of my study, I would be pleased to share my results with members of the hospital staff. I thank you in advance for your consideration of this request. would appreciate a reply at your earliest convenience. Yours sincerely,  Helga A. Marshall, B.Sc.N.  I  117 APPENDIX B LETTER TO THE FAMILY PHYSICIAN  Dear I am a registered nurse currently enrolled in the graduate program at the University of British Columbia, School of Nursing. In pursuit of my interest in adolescent patients, my thesis will explore the impact of inflammatory bowel disease on adolescent self-image. Permission to proceed with the study has been granted by the U.B.C. Behavioural Sciences Screening Committee for Research and the B. C. Children's Hospital Research Review Committee. The research subjects will be asked to complete a self-assessment questionnaire. The study will be fully explained to the patient. In the event that a subject is under the age of 16 years, a parental consent will be obtained. Safeguards have been taken to guarantee the subject's anonymity and/or confidentiality both in terms of their participation and responses. No individual will be identified in the final report. I hope this study meets with your approval, but i f you do not wish your patient to participate, please let me know by Yours sincerely,  Helga A. Marshall, B.Sc.N.  118  APPENDIX B LETTER OF EXPLANATION TO THE GASTROENTEROLOGIST Dear : I am a registered nurse currently enrolled in the graduate program at the University of British Columbia, School of Nursing. In pursuit of my interest in adolescent patients, my thesis will explore the impact of inflammatory bowel disease on adolescent self-image. Permission to proceed with the study is currently being reviewed by the U.B.C. Behavoural Sciences Screening Committee for Research and the B. C. Children's Hospital Research Review Committee. Subjects will be selected in consultation with Anne Crozier, the clinical nurse specialist in gastroenterology. They will be contacted i n i t i a l l y by explanatory letter from the investigator. Subjects will be asked to complete a self-assessment questionnaire. The study will be fully explained to the patient and in the event that a subject is under the age of 16 years, a parental consent will be obtained. Safeguards have been taken to guarantee the subject's anonymity and/or confidentiality both in terms of their participation and responses. No individual will be identified in the final report. The purpose of this letter is to inform you of this study and to request your permission to include your patients who meet the sampling criteria identified in the proposal for this study. A drafted consent form is included with the research proposal, as an example. Signing this consent form will suggest your approval of the study and permission to study patients identified as suitable. I expect to begin data collection in May 1986 at which time I will contact you in person. I look forward to your participation in this study and thank you in advance for your consideration and assistance. Yours sincerely, Helga A. Marshall, B.Sc.N.  119 APPENDIX B  GASTROENTEROLOGIST'S CONSENT  I,  , give consent for Helga  Marshall, a graduate student at the School of Nursing, University of British Columbia, to include patients identified for the study of the influence of a chronic i l l n e s s , namely inflammatory bowel disease, on adolescent self-image. I understand the purpose and design of the study and am assured that there will be no risk to the patient.  I understand that the  patient's written consent will be obtained and that parental consent will also be obtained i f the respondent is under 16 years of age.  I  have been assured of the anonymity and/or confidentiality of both the respondent and myself.  DATED at Vancouver, this  day of  Signed:  , 1986.  120 APPENDIX B EXPLANATION TO PARENT OF ADOLESCENT WITH IBD Dear Mr./Mrs. . My name is Helga Marshall. I am a graduate nursing student at the University of British Columbia, School of Nursing. I am currently conducting a research study in partial fulfillment of the requirements for a Master of Science in Nursing degree. I wish to study the influence that Crohn's disease/ulcerative c o l i t i s has on the way adolescents see, think and feel about themselves. Although this study will hold no risk or direct benefit for your son/daughter, it may benefit others like him/her in the future. Refusal to take part in the study will not interfere with the care that your son/daughter receives at the British Columbia Children's Hospital. Your son/daughter has been asked to complete a questionnaire. He/she may refuse to answer any questions and is free to withdraw from the study at any time. All information will be kept confidential. The questionnaire will be coded by number and not by name. Any published findings will maintain the anonymity of the participants. Your son/daughter's physician at the B. C. Children's Hospital has been informed of the details of the study and has given his approval for your son/daughter's participation. However, the decision to participate belongs to you and your son/daughter. For the credibility of the study it is important that your son/daughter answer the questions in the questionnaire on his/her own, without outside influence. It will take approximately 40 minutes of his/her time. If your son/daughter is under 16 years of age and you consent to his/her participation in the study, would you please sign the form enclosed indicating your consent and return the form with your son/daughter's completed questionnaire in the stamped and addressed envelope provided. I appreciate your interest in this study and thank you in advance for the contribution you will be making towards research in this area by granting permission for your son/daughter's participation. Yours sincerely,  Helga A. Marshall, B.Sc.N  121 APPENDIX B  PARENTAL CONSENT - ADOLESCENT WITH IBD  I,  consent/do not consent for  to participate in a study conducted by Helga Marshall to investigate the influence of inflammatory bowel disease (Crohn's disease or ulcerative colitis) on adolescent self-image.  I understand that the study is being  conducted in order to gain further insight into the impact of a chronic illness on adolescent self-image and that  wishes to  participate. I understand that  will be asked to complete a  questionnaire at which time I will not be immediately present.  I  understand that the information provided by  will be  kept confidential and any findings published will be kept anonymous. I understand that  is not obligated to  participate and that it will be explained to him/her that he/she is free to withdraw from the study at any time.  I understand that  's participation will neither be of risk nor direct benefit to him/her but may benefit others like him/her in the future.  I understand that  his/her participation in this study will not affect his/her future care at the British Columbia Children's Hospital.  DATED this Signed:  day of  , 1986.  123 APPENDIX B  ADOLESCENT CONSENT - ADOLESCENT WITH IBD  I,  consent to participate  in an investigation conducted by Helga Marshall to study the influence of inflammatory bowel disease (Crohn's disease or ulcerative colitis) on the way I see, think and feel about myself.  I understand that the study  will be of no risk or direct benefit to me but the results may lead to improving the nursing care of others like me in the future. I understand that I will be asked to complete a questionnaire at the hospital or in my home.  I may refuse to answer any questions as I  see f i t . I understand that I am not obliged to participate and that I am free to withdraw from the study at any time and that my future care will not be adversely affected. I understand that any information given by me will be kept confidential and that my name will not appear in the final  DATED this  day of  report.  , 1986.  APPENDIX C DEMOGRAPHIC DATA  Age Age Category Sex Height Percentile Weight Percentile Bone Age Growth Retardation DDSSC Presence Bowel Surgery Ileostomy/Colostomy Working Full time Years lived in Canada New Canadian Ethnic origin Socio-economic status No. of parent(s) employed outside the home  APPENDIX C THE OFFER SELF-IMAGE QUESTIONNAIRE*  THIS QUESTIONNAIRE  IS USED FOR SCIENTIFIC PURPOSES.  THERE ARE NO  RIGHT OR WRONG ANSWERS. AFTER CAREFULLY READING EACH OF THE STATEMENTS ON THE FOLLOWING PAGES PLEASE PLACE YOUR CHOICE OF ANSWER, AS A YES OR NO, IN THE SPACE ON THE FAR RIGHT HAND SIDE OF THE PAGE BESIDE THE STATEMENT YOU JUST READ.  PLEASE CIRCLE THE NUMBER ON THE ANSWER SHEET THAT INDICATES HOW  WELL THE STATEMENT DESCRIBES YOU; THE NUMBERS CORRESPOND WITH CATEGORIES OF ANSWERS FROM "DESCRIBES ME VERY WELL" (1) TO "DOES NOT DESCRIBE ME AT ALL" ( 6 ) .  PLEASE CHOOSE ONLY ONE ANSWER FOR EACH STATEMENT AND WRITE  ITS NUMBER IN THE SPACE PROVIDED ON THE FAR RIGHT HAND SIDE OF THE PARAGRAPH.  ANSWER  EXAMPLE STATEMENT:  1.  I AM AN ADOLESCENT.  1.  1  CHOICE OF ANSWERS: 1-DESCRIBES ME VERY WELL  3-DESCRIBE5 ME F A I R L Y WELL  5-DOES NOT R E A L L Y D E S C R I B E ME  2-DESCRIBES ME WELL  4-DOES NOT QUITE DESCRIBE ME  6-DOES NOT DESCRIBE ME A T ALL  PLEASE RESPOND TO ALL ITEMS IF POSSIBLE. THANK YOU. * O f f e r , D . , O s t r o v , E . , & Howard, K . I . (1982a)  126 APPENDIX C THE OFFER SELF-IMAGE QUESTIONNAIRE  1- DESCRIBES ME V E R Y W E L L  3--DESCRIBES ME F A I R L Y W E L L  5-DOES NOT R E A L L Y DESCRIBE ME  2- -DESCRIBES ME W E L L  4 - D O E S NOT Q U I T E DESCRIBE ME  6 - D 0 E S NOT DESCRIBE ME A T A L L  1.  1 C A R R Y MANY GRUDGES.  1  2.  WHEN 1 A M WITH PEOPLE 1 A M A F R A I D T H A T S O M E O N E WILL M A K E FUN O F M E .  7  3.  MOST O F T H E TIME 1 THINK T H A T T H E W O R L D IS A N EXCITING P L A C E T O LIVE  4.  1 THINK T H A T 1 WILL BE A S O U R C E OF PRIDE T O MY P A R E N T S IN T H E F U T U R E .  4  5.  1 W O U L D NOT H U R T S O M E O N E |UST FOR T H E " H E C K OF  5  6.  T H E R E C E N T C H A N G E S IN MY BODY H A V E G I V E N ME SOME  7.  1 A M G O I N G T O DEVOTE MY Ufl T O HELPING OTHERS.  7  S.  1 " L O S E MY H E A D "  8  9.  3  IN.  IT."  6  SATISFACTION.  EASILY.  MY P A R E N T S A R E A L M O S T A L W A Y S ON THE SIDE OF SOMEONE E L S E , e.g. MY  BROTHER  9  10.  OR SISTER. T H E OPPOSITE SEX FINDS ME A B O R E .  1 i  IF 1 WOULD UL S E P A R A T E D F R O M A l . l . T i l l  l 'J.  DE A B L E T O M A K E A GO OF IT. 1 F E E L TENSE MOST OF THE. TIME  13  1 U S U A L L Y F E L L O U T OF P E A C E AT PICNICS A N D  l-i.  1 F E E L THAT  1 5.  MY P A R E N T S WILL BE DISAPPOINTED IN ME IN T H E F U T U R E .  15  16.  IT IS VERY H A R D FOR A TEENAGER T O K N O W H O W T O H A N D L E SEX IN A RIGHT W A Y .  16  17.  17.  18.  A T TIMES 1 H A V E FITS O F C R Y I N G A N D / O R L A U G H I N G T H A T 1 S E E M U N A B L E T O CONTROL. 1 A M G O I N G T O D E V O T E M Y LIFE T O MAKING AS M U C H M O N E Y AS 1 C A N .  19.  IF 1 PUT MY MIND T O IT, 1 C A N I.FARN A L M O S T A N Y T H I N G .  19.  20.  O N L Y STUPID P E O P L E WORK.  20  21.  V E R Y O F T E N 1 F E E L T H A T MY F A T H E R IS NO G O O D .  21  22.  1 A M C O N F U S E D MOST OF THE TIME.  22  10 PEOPLE. 1 KNOW. 1 F E E L T H A T 1 W O U L D  NOT  1 1 12  PARTIES.  WORKING IS T O O MUCH RESPONSIBILITY FOR M E .  13 14  IS  127 APPENDIX C THE OFFER SELF-IMAGE QUESTIONNAIRE* 1- DESCRIBES ME V E R Y W E L L  3 - D E S C R I B E S ME F A I R L Y W E L L  5 -DOES N O T R E A L L Y DESCRIBE ME  2 - DESCRIBES ME W E L L  4 - D O E S NOT Q U I T E DESCRIBE ME  6 - D O E S N O T DESCRIBE ME A T A L L  23.  1 F E E L INFERIOR T O MOST P E O P L E 1 KNOW.  23.  24.  UNDERSTANDING  24  25.  1 DO N O T LIKE T O PUT THINGS IN O R D E R A N D M A K E SENSE O F T H E M .  25  26.  1 C A N C O U N T ON MY P A R E N T S MOST O F T H E T I M E .  26  27.  IN T H E PAST Y E A R 1 H A V E B E E N V E R Y WORRIED A B O U T M Y H E A L T H .  27  28.  D I R T Y JOKES A R E FUN A T TIMES.  28  29.  1 O F T E N B L A M E M Y S E L F E V E N WHEN 1 A M NOT A T F A U L T .  29  30.  1 W O U L D NOT STOP A T A N Y T H I N G IF 1 F E L T 1 WAS D O N E W R O N G .  30  31.  MY SEX ORGANS A R E NORMAL.  31  32.  MOST O F T H E TIME 1 A M HAPPY.  32  33.  1 A M G O I N G T O DEVOTE MYSELF T O M A K I N G THE W O R L D A BETTER PLACE T O LIVE IN  33  34.  1 C A N T A K E CRITICISM WITHOUT R E S E N T M E N T .  34  35.  MY WORK, IN G E N E R A L , IS A T L E A S T AS G O O D AS T H E WORK O F T H E G I R L N E X T T O M E .  3S  36.  36  37.  SOMETIMES 1 F E E L SO A S H A M E D O F M Y S E L F T H A T 1 JUST W A N T T O HIDE IN A C O R N E R AND C R Y . 1 A M S U R E T H A T 1 WILL BE PROUD A B O U T MY F U T U R E PROFESSION.  37  38.  MY F E E L I N G S A R E EASILY  38 '  39.  WHEN A T R A G E D Y O C C U R S T O ONE OF MY FRIENDS,  40.  1 B L A M E O T H E R S E V E N WHEN 1 KNOW T H A T 1 A M A T F A U L T T O O .  40  41.  WHEN 1 WANT S O M E T H I N G ,  41  42.  T H E PICTURE 1 H A V E OF M Y S E L F IN T H E F U T U R E SATISFIES M E .  4?  43.  1 AM A SUPERIOR S T U D E N T IN S C H O O L .  43  44.  1 FEEL R E L A X E D UNDER NORMAL CIRCUMSTANCES.  44  MY P A R E N T S IS B E Y O N D M E .  HURT. 1 FEEL SAD TOO.  1 JUST SIT A R O U N D WISHING 1 C O U L D H A V E IT.  39  128 APPENDIX C THE OFFER SELF-IMAGE QUESTIONNAIRE  1- DESCRIBES ME V E R Y W E L L  3-DESCRIBES ME F A I R L Y W E L L  5 - D O E S NOT R E A L L Y DESCRIBE ME  2- DESCRIBES ME W E L L  4 - D O E S NOT QUITE DESCRIBE ME  6 -DOES NOT DESCRIBE ME A T A L L  45.  1 F E E L EMPTY E M O T I O N A L L Y MOST O F T H E TIME.  45  46.  1 W O U L D R A T H E R SIT A R O U N D A N D L O A F T H A N WORK.  46  47.  EVEN IF IT WERE D A N G E R O U S , 1 W O U L D HELP S O M E O N E W H O IS IN  48.  T E L L I N G T H E T R U T H M E A N S NOTHING T O M E .  49.  TROUBLE.  47 48 49  O U R SOCIETY IS A COMPETITIVE O N E A N D 1 A M N O T AFRAID O F IT.  50.  1 G E T V I O L E N T IF 1 DON'T G E T MY WAY.  50  51.  MOST O F T H E TIME MY P A R E N T S G E T A L O N G W E L L WITH E A C H O T H E R .  51  52.  1 THINK T H A T O T H E R PEOPLE )UST DO NOT LIKE M E .  52  53.  1 FIND IT V E R Y D I F F I C U L T T O ESTABLISH NEW FRIENDSHIPS.  53  54.  1 A M SO V E R Y  54  55.  WHEN MY P A R E N T S A R E STRICT,  56.  WORKING C L O S E L Y WITH A N O T H E R GIRL N E V E R GIVES ME P L E A S U R E .  56  57.  1 A M PROUD O F MY BODY.  57  58.  A T TIMES 1 THINK A B O U T WHAT KIND OF WORK 1 WILL DO IN T H E F U T U R E .  58:  59.  E V E N U N D E R PRESSURE 1 M A N A G E T O REMAIN C A L M .  59  60.  60  61.  WHEN 1 GROW UP A N D H A V E A F A M I L Y , IT WILL BE IN A T L E A S T A FEW WAYS SIMILAR TO MY OWN. 1 O F T E N F E E L T H A T 1 WOULD R A T H E R DIE, T H A N G O ON LIVING.  62.  1 FIND IT E X T R E M E L Y H A R D T O M A K E FRIENDS.  62  63.  1 W O U L D R A T H E R BE SUPPORTED FOR T H E REST O F MY LIFE T H A N WORK.  63  64.  1 F E E L T H A T 1 H A V E A P A R T IN M A K I N G F A M I L Y DECISIONS.  64  65.  1 DO NOT MIND BEING C O R R E C T E D , SINCE 1 C A N L E A R N F R O M IT.  65  ANXIOUS. 1 F E E L T H A T T H E Y A R E RIGHT,  E V E N IF 1 G E T A N G R Y .  55  61  ,  129 APPENDIX C THE OFFER SELF-IMAGE QUESTIONNAIRE  1- DESCRIBES ME V E R Y W E L L  3--DESCRIBES ME F A I R L Y W E L L  5--DOES NOT R E A L L Y DESCRIBE ME  2- DESCRIBES M E W E L L  4 - D O E S NOT Q U I T E DESCRIBE ME  6 - D O E S NOT DESCRIBE ME A T A L L  66.  I F E E L SO V E R Y L O N E L Y .  66.  67.  I DO NOT C A R E HOW MY ACTIONS A F F E C T O T H E R S AS L O N G AS I GAIN S O M E T H I N G .  67.  68.  I ENJOY LIFE.  68-  69.  I K E E P A N E V E N T E M P E R MOST O F T H E T I M E .  69-  70.  A JOB W E L L D O N E GIVES ME P L E A S U R E .  70-  71.  M Y P A R E N T S A R E U S U A L L Y P A T I E N T WITH M E .  71.  72.  I S E E M T O BE F O R C E D T O IMITATE T H E P E O P L E I L I K E .  72.  73.  73-  74.  V E R Y O F T E N P A R E N T S DO NOT U N D E R S T A N D A PERSON B E C A U S E T H E Y H A D A N U N H A P P Y CHILDHOOD. FOR ME G O O D SPORTSMANSHIP IN S C H O O L IS AS I M P O R T A N T AS WINNING A G A M E .  75.  I P R E F E R BEING A L O N E T H A N WITH KIDS M Y A G E .  75-  76.  WHEN I D E C I D E T O DO SOMETHING,.  76-  77.  I THINK T H A T BOYS FIND ME A T T R A C T I V E .  77-  78.  O T H E R P E O P L E A R E NOT A F T E R ME T O T A K E A D V A N T A G E O F M E .  78-  79.  I F E E L T H A T T H E R E IS P L E N T Y I C A N L E A R N F R O M O T H E R S .  79-  80.  I DO NOT A T T E N D S E X Y SHOWS.  80-  81.  I FEAR SOMETHING CONSTANTLY.  81-  82.  V E R Y O F T E N I THINK T H A T I A M NOT A T A L L T H E PERSON I WOULD LIKE T O B E .  82-  I DO IT.  74.  83.  I LIKE T O H E L P A FRIEND W H E N E V E R I C A N .  83-  84.  IF I KNOW T H A T I WILL H A V E T O F A C E A NEW S I T U A T I O N , I WILL T R Y IN A D V A N C E T O FIND O U T AS MUCH AS IS POSSIBLE A B O U T IT. U S U A L L Y I F E E L T H A T I AM A B O T H E R A T H O M E .  84-  85.  85-  86.  IF O T H E R S DISAPPROVE O F ME I G E T T E R R I B L Y UPSET.  86-  87.  I LIKE ONE OF MY PARENTS MUCH BETTER T H A N T H E OTHER.  87-  130 APPENDIX C THE OFFER SELF-IMAGE QUESTIONNAIRE  :  1- DESCRIBES ME V E R Y W E L L  3-DESCRIBES ME F A I R L Y W E L L  5 -DOES NOT R E A L L Y DESCRIBE ME  2- DESCRIBES ME W E L L  4 - D O E S NOT Q U I T E DESCRIBE ME  6--DOES NOT DESCRIBE ME A T A L L  88.  BEING T O G E T H E R WITH O T H E R PEOPLE GIVES ME A G O O D F E E L I N G .  88  89 90.  W H E N E V E R I FAIL IN S O M E T H I N G , I T R Y T O FIND O U T WHAT I C A N DO IN O R D E R T O A V O I D ANOTHER FAILURE. I F R E Q U E N T L Y FEEL UGLY AND U N A T T R A C T I V E .  90  91.  S E X U A L L Y I A M WAY BEHIND.  91  92.  IF Y O U CONFIDE IN OTHERS Y O U ASK FOR TROUBLE.  92  93.  E V E N T H O U G H I A M C O N T I N U O U S L Y ON T H E G O , I S E E M U N A B L E T O G E T THINGS D O N E .  93  94.  WHEN O T H E R S L O O K A T ME T H E Y MUST THINK T H A T I A M P O O R L Y D E V E L O P E D .  94  95.  MY PARENTS ARE ASHAMED OF ME.  95  96.  I B E L I E V E I C A N T E L L THE R E A L F R O M T H E F A N T A S T I C .  96  97.  T H I N K I N G OR T A L K I N G A B O U T SEX FRIGHTENS M E .  97  98.  I A M AGAINST GIVING SO M U C H M O N E Y T O THE POOR.  98  99.  I F E E L STRONG AND HEALTHY.  99  89  100.  E V E N WHEN I A M SAD I C A N ENJOY A G O O D | O K E .  100  101.  THERE IS N O T H I N G W R O N G WITH PUTTING ONESELF BEFORE OTHERS.  101  102.  I T R Y T O S T A Y A W A Y FROM HOME MOST O F T H E T I M E .  102_  103.  I FIND LIFE A N ENDLESS SERIES O F P R O B L E M S - W I T H O U T SOLUTION IN SIGHT.  103  104.  A T TIMES I F E E L LIKE A L E A D E R A N D F E E L T H A T O T H E R KIDS C A N L E A R N SOMETHING FROM ME.  104  105.  I F E E L T H A T I A M A B L E T O M A K E DECISIONS.  105  106.  I H A V E B E E N C A R R Y I N G A G R U D G E A G A I N S T MY P A R E N T S FOR Y E A R S .  106  107.  I A M C E R T A I N T H A T I WILL NOT BE A B L E T O A S S U M E RESPONSIBILITIES FOR M Y S E L F IN THE FUTURE. WHEN I E N T E R A NEW ROOM I H A V E A S T R A N G E A N D F U N N Y F E E L I N G .  107.  108. 109.  I F E E L T H A T I H A V E NO T A L E N T W H A T S O E V E R .  109  1 OS  .  .  131 APPENDIX C THE OFFER SELF-IMAGE QUESTIONNAIRE  1- D E S C R I B E S M E V E R Y W E L L  3-DESCRIBES ME FAIRLY WELL  5-DOES NOT R E A L L Y DESCRIBE ME  2- DESCRIBES ME WELL  4-DOES NOT QUITE DESCRIBE M E  6-DOES NOT DESCRIBE ME AT A L L  110.  I DO NOT R E H E A R S E HOW I MIGHT D E A L WITH A R E A L COMING E V E N T .  110.  111.  WHEN I A M WITH P E O P L E I A M B O T H E R E D BY H E A R I N G S T R A N G E NOISES.  111.  112.  MOST O F T H E T I M E M Y P A R E N T S A R E SATISFIED WITH M E .  112.  113.  I DO N O T H A V E A P A R T I C U L A R L Y D I F F I C U L T TIME IN M A K I N G FRIENDS.  113.  114.  I DO NOT E N J O Y S O L V I N G D I F F I C U L T P R O B L E M S .  114.  115.  SCHOOL AND STUDYING MEAN V E R Y LITTLE T O ME.  115.  116.  E Y E FOR A N E Y E A N D T O O T H FOR A T O O T H DOES NOT A P P L Y FOR OUR S O C I E T Y .  116.  117.  S E X U A L E X P E R I E N C E S G I V E ME P L E A S U R E .  117.  118.  V E R Y O F T E N I F E E L T H A T MY M O T H E R IS NO G O O D .  118.  119.  H A V I N G A B O Y F R I E N D IS I M P O R T A N T T O M E .  119.  120.  I W O U L D NOT LIKE T O BE A S S O C I A T E D WITH T H O S E KIDS WHO "HIT BELOW T H E B E L T . "  120.  121.  W O R R Y I N G A L I T T L E A B O U T ONE'S F U T U R E HELPS T O M A K E IT WORK O U T B E T T E R .  121.  122.  I O F T E N THINK A B O U T S E X .  122.  123.  USUALLY I CONTROL MYSELF.  123.  124.  I E N J O Y MOST PARTIES I G O T O .  124.  125.  D E A L I N G WITH NEW I N T E L L E C T U A L SUBJECTS IS A C H A L L E N G E FOR M E .  125.  126.  I DO N O T H A V E M A N Y F E A R S WHICH I C A N N O T U N D E R S T A N D .  126.  127.  NO O N E C A N H A R M ME JUST BY NOT LIKING M E .  127.  128.  I A M F E A R F U L O F GROWING UP.  128.  129.  I R E P E A T THINGS C O N T I N U O U S L Y T O BE S U R E T H A T I A M RIGHT.  129.  130.  I F R E Q U E N T L Y FEEL SAD.  130_  133  APPENDIX D THE CONSENTS TO PROCEED GIVEN BY TWO PHYSICIANS, HEALTH RECORDS AND THE NURSING DEPARTMENT OF THE BRITISH COLUMBIA CHILDREN'S HOSPITAL  APPLICATION' TO:  IN-HOSPITAL RESEARCH REVIEW COMMITTEE  - CHILDREN'S HOSPITAL  The Committee meets the f i r s t Tuesday of each month. For prompt c o n s i d e r a t i o n of y o u r proposal submit a l l r e q u i r e d documents to Room U l l ( l o c a l 2300) C h i l d r e n ' s H o s p i t a l by the 15th of the month before the Committee i s scheduled t o meet. I f more urgent approval i s r e q u i r e d , p l e a s e d i s c u s s y o u r p r o j e c t w i t h the I n - H o s p i t a l Research Review Committee Chairman. PROJECTS WHICH DO NOT REQUIRE APPROVAL ARE THOSE WHICH INVOLVE: •1.  Q u a l i t y of care o r outcome of therapy s t u d i e s which are f o r p r e s e n t a t i o n w i t h i n the hospital.  2.  Case r e p o r t s .  3.  Use of the Medical Records Department f o r c h a r t reviews which are f o r " i n - h o u s e " purposes such as an i n t e r n a l ward round, e t c .  4.  Undergraduate t e a c h i n g p r o j e c t s w i t h a l i m i t e d number of  patients.  PROJECTS WHICH DO REQUIRE APPROVAL OF THIS COMMITTEE ARE THOSE IN WHICH THERE I S : 1.  D i r e c t c o n t a c t w i t h p a t i e n t s or t h e i r f a m i l i e s ,  2.  Any use of h o s p i t a l f a c i l i t i e s ,  Investigator's  Name:  hfFJL  Division/Department: T i t l e of P r o j e c t : I.  (except as covered above)  s e r v i c e s or p a t i e n t s as p a r t of a r e s e a r c h p r o j e c t .  M/q&SH&tL.  <g»  /v uf?<,  Tue  or  /MPACT  tNFi*>MMA-mfiV  Are you a p p l y i n g f o r a grant to do t h i s p r o j e c t ? I f yes p l e a s e enclose a copy.  &t>wejL Yes  IOJS£AS£  No  OH  TH£  |/~  I f no p l e a s e enclose at l e a s t two pages of t y p e w r i t t e n m a t e r i a l which w i l l a l l o w us to e v a l u a t e the p r o j e c t . These should i n c l u d e a l i t e r a t u r e r e v i e w , some comments on the purpose and r e l e v a n c e of the s t u d y , some d e t a i l s of methodology p a r t i c u l a r l y r e g a r d i n g data a n a l y s i s and an e x p l a n a t i o n of how p a t i e n t s ' i n t e r e s t s w i l l be p r o t e c t e d . Expected S t a r t i n g Date:  , / tftft,  Expected Completion Date: II.  /^y^  Purpose of Study: 1. P u b l i c a t i o n i n a J o u r n a l : 2. Own study purposes: 3. P r e s e n t a t i o n at M e e t i n g : 4. Other - D e f i n e : TH£  III.  Date of P r e s e n t a t i o n :  rt/£S/s. //v P'/j/KT/siL FaiF/LjiMs/iT  of & rtSKr£& &r sc,je„e£  Where a p p l i c a b l e please f i l l out the request f o r e t h i c a l review u s i n g the form of U . B . C . C l i n i c a l Screening Committee. Please enclose t h i s . Are parents of the c h i l d you propose to study l i k e l y to be approached f o r p a r t i c i p a t i o n i n t h i s or another study? Amplify i f n e c e s s a r y .  the  139  APPENDIX E  PS-1: IMPULSE CONTROL  (52)  PS-2: EMOTIONAL TONE  (51)  PS-3: BODY & SELF IMAGE  (47)  SS-1: SOCIAL RELATIONSHIPS  (56)  SS-2: MORALS  (54)  SS-3: VOCAT/EDUCAT GOALS  (52)  S X S : SEXUAL ATTITUDES  (47)  FS : FAMILY RELATIONSHIPS  (54)  CS-1: MASTERY OF EXT. WORLD  (50)  CS-2: PSYCHOPATHOLOGY  (53)  CS-3: SUPERIOR ADJUSTMENT  (54)  <  10  20  30  40  50  60  70  1 80  90  100  STANDARD SCORES  0 The numbers In parentheses are standard score values for each scale; 50 represents the average score for a sex, same age normative sample. For each scale the higher the score, the better the teen-ager's adjustment In the area measured by this scale.  Figure 1:  The IBD sample's (N=24) standard score means for OSIQ subscales in comparison to Offer et a l . ' s (1981a) normative sample.  Note:  Shaded Areas represent the range in which a sample of "normal" adolescents would score. The samples being compared should contain at least 40 subjects to make the assumption that they are similar or different from the normal sample, if their scores fall within or outside the shaded areas.  APPENDIX E  b n = 13  a N = 24  c n = 11  PS-1: IMPULSE C O N T R O L  (52)  (SI)  (51)  PS-2: EMOTIONAL T O N E  (51)  (55)  (46)  PS-3: BODY & S E L F IMAGE  (47)  <S2>  («D  SS-1: SOCIAL RELATIONSHIPS  (56)  (61)  (50)  SS-2: M O R A L S  (S4)  (S3)  (55)  SS-3: V O C A T / E D U C A T G O A L S  (52)  (52)  (51)  S X S : S E X U A L ATTITUDES  (47)  (56)  (36)  FS : FAMILY RELATIONSHIPS  (54)  (57)  (50)  CS-1: M A S T E R Y O F E X T . W O R L D  (SO)  (54)  (46)  CS-2: PSYCHOPATHOLOGY  (53)  (55)  (50)  CS-3: SUPERIOR A D J U S T M E N T  (54)  (S4)  (53)  ~i—r 10  20  I 10  40  50  60  70  STANDARD S C O R E S  n r 10  20  0  40  50  60  i—i—r  70 STANDARD S C O R E S  80  90  i—n—i—i—I—i—i—i—i—I 0  10  20  JO  40  EO  60  70  80  60  100  STANDARD S C O R E S  0 The numbers In parentheses are standard score values for each scale; 50 represents the average score tor a sit, same age normative sample. For each scale the higher the score, the better the teen-ager's adjustment In the area measured by this seals.  Figure 2:  The a) IBD sample's, b) IBD without GR subgroup's and c) IBD with GR subgroup's standard score means for the OSIQ subscales in comparison to Offer et al.'s (1981a) normative sample.  Note:  Shaded Areas represent the range in which a sample of "normal" adolescents would score. The samples being compared should contain at least 40 subjects to make the assumption that they are similar or different from the normal sample, if their scores fall within or outside the shaded areas.  

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