Adjustment in Diabetic Adolescent Girls: I.

Development of the Diabetic Adjustment Scale

BARBARA-JEAN SULLIVAN, RN, MSN

A 37-item scale was designed to assess life adjustment in 105 adolescent girls with juvenile diabetes. The scale elicited information on peer relationships, family relationships, body image concerns, dependence-independence conflicts, school adjustment, and attitudes toward diabetes. Results of this initial attempt at measuring diabetic adjustment suggest that this group of girls was relatively well adjusted and that their attitudes toward diabetes correlate positively with many adjustment factors. The importance of self-report scales which address the realities of life with diabetes is emphasized.

INTRODUCTION

Psychological aspects of juvenile diabetes have been a focus of pediatric and psychiatric research for many years. Prior studies have examined the role of emotional factors in the etiology of diabetes (1, 2, 3); the relationship between psychological factors and the cause of diabetes (4-10); and the possibility of a "diabetic personality" configuration (1, 3, 6, 8, 11-16). Some studies emphasize the need for early psychological intervention (2, 6, 13). Although the literature about juvenile diabetes is extensive, prevention of psychological concomitants is hindered by the limited amount of conclusive data. This may be partly due to the paucity of studies focused on: (1) specific developmental stages and (2) assessment of the individual's view of juvenile diabetes, its treatment, and its influence on daily funcFrom the Human Services and Resource Center, Division of Connecticut Mental Health Center, West Haven. Presented, in part, at the Fourth International Conference on Diabetes and Camping, May 1971, Fresno California. Address reprint requests to: Barbara-Jean Sullivan, Yale University School of Nursing, 855 Howard Avenue, New Haven Conn. 06512. Received for publication July 31, 1978; revision received November 29, 1978.

tioning. This paper is the first of a twopart series. Part I reports on the development of a scale for assessment of life adjustment (Diabetic Adjustment Scale) in a specific group of adolescent girls who have diabetes. Part II reports on the use of the Diabetic Adjustment Scale (DAS) and its relationship to other standardized scales. In a paper on the role of bodily illness in the mental life of children, Anna Freud (17) established that serious physical illness may have a lasting effect on the personality development of a child. Swift et al. (18) have found a high degree of emotional difficulty in juvenile diabetics as a group. Case reports on depression, suicide, and other psychological problems of juvenile diabetics corroborate these findings (Straight et al [19]; Falstein and Judas [20]; Shirley and Greer [21]; Hinkle and Wolf [22], and Daniels [23]). Because behavior patterns and attitudes formed in adolescence often persist throughout life, psychological intervention prior to the establishment of solidified maladaptive behavior patterns is essential in the prevention of pathological adjustment. However, few adjustment scales specific to living with diabetes have been devised for the purposes of as119
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Copyright 1979 by the American Psychosomatic Society, Inc. Published by Elsevier North Holland, Inc.

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sessing potential adjustment problem areas. In the present study, the DAS was designed specifically for adolescent girls who have diabetes. The scale was used to assess girls' attitudes toward diabetes, peer relationships, family relationships, school adjustment, dependence-independence conflicts, and body image concerns. This report focuses on the development of the DAS and results from its initial use.
METHODS

would be used, and that the investigator would be the only person to have access to the information. Subjects were assured that their responses on the questionnaire would have no bearing on their treatment at camp. All 105 subjects were given the DAS and instructed to complete it with the assumption that the researcher had virtually no information about them.

Instrumentation
The DAS consisted of 37 true-false items designed to elicit information about the adolescent girl's thoughts and feelings about her diabetes. A total of 86 items were initially generated from interviews with diabetic adolescents, their parents, their clinicians, and individuals who live with people who have juvenile diabetes. Participants were asked to list ways in which diabetes affects the lives of people who have juvenile diabetes. Additional items were drawn from an extensive review of the literature on adolescent developmental issues and the psychological aspects of diabetes. The final list of 37 items was selected for use on the DAS by a team of clinicians who determined that the items adequately reflected how diabetes influences lifestyles. On the basis of this selection, the scale was constructed using direct statements about the adolescent's life (e.g., "Sometimes I fake insulin reactions"). Some items were duplicated in paraphrased form to validate consistency of responses. Scoring was based on 29 of the 37 items. The remaining eight items were excluded from the total scoring because they sought direct information and did not assess adjustment. Each of the other 29 items was scored in the direction of adjustment; that is, a negative adjustment response received two points, and a positive adjustment response received one point. Accordingly, the higher score indicated more negative adjustment. For example, for the statement "Sometimes I fake insulin reactions," if the patient circled "true," she would receive two points for negative adjustment whereas if she circled "false," she would receive one point for positive adjustment. Determinations of positive and negative adjustment were made by a team of specialists in pediatrics and psychiatry. These decisions were based primarily on clinical experience and judgment as well as knowledge of ego strengths, coping, and stress. It was not clear how to score some of the items. For example, in the statement, "I feel it is necessary to cover up the bumpy areas of my body with clothes," a "true" response was viewed by the expert team as reflecting positive adjustment for its evidence of ego strength.

Subjects and Setting

The subjects were 105 female adolescents with diabetes between the ages of 12 and 16 years. All subjects were included in the study if they met age criteria and consented to participate in the study. All subjects were surveyed at the Clara Barton Camp for Girls with Diabetes in North Oxford, Mass. The camp is medically operated by the Joslin Clinic in Boston, Mass. The diabetic campers represent all socioeconomic classes and a variety of approaches to diabetes management. 44% of the diabetic subjects were Joslin Clinic patients, whereas the remainder received care elsewhere. The mean age for diabetic girls was 13.8 years with a mean birth order of 2.7. The mean duration of diabetes was 7.1 years {3.5 SD) with a range of 6 months to 16 years. 77 % of the subjects had been to camp before. The number of years of previous camp attendance ranged from 0 to 9 years with a mean of 3.0 years. Generally, children and adolescents were referred to the camp to have fun and to learn about medical and psychological management of diabetes. The subjects were surveyed on the 1st day of three camping sessions in order to limit the influence of a diabetic peer group on results.

Procedures
Consent was obtained from all subjects after they were informed aboutthe purpose of the research and the voluntary nature of their participation. Subjects were told that the purpose of the study was to discover how girls their age feel about themselves and their diabetes. All were informed that their responses would be confidential, that code numbers 120

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ADJUSTMENT IN DIABETIC ADOLESCENT GIRLS I. Others might view a "true" response as failure to accept the realities of diabetes. The reliability of these decisions will be learned through continued use of the DAS.

according to the number of "true" responses given to them by diabetic subjects. Sections A and B of Table 1 show the highest frequency of responses whereas sections D and E show the lowest RESULTS frequency of responses. Interestingly, the Table 1 shows frequencies of diabetic majority of statements in sections A and B girls' responses to individual statements reflect adjustment responses whereas the of the DAS. The statements are ordered majority of statements in sections D and E
TABLE 1. Frequencies of True Responses on the DAS (Af=105)

(A) Approxima tely 2/3 (or above) of the diabetic sample: Give the ir own insulin to themselves (89) Take par in figuring out their own meals (82) Tell mos of their friends at home that they have diabetes (72) Tell thei teachers they have diabetes (64) Enjoy ea ting with their friends (64) (B) Approximately 112 of the diabetic sample: Feel it is necessary to cover up the bumpy areas of their bodies with clothes (54) Feel diabetes is a serious illness (55) Wish they were more independent (52) Feel that nothing changed at their homes when they were diagnosed as having diabetes (52) Feel embarrassed when they have to refuse f c x i (45) Feel their parents are more concerned about their diabetes than about them (45) Feel that people who have juvenile diabetes get too many responsibilities before they are ready for them (41) (C) Approximately 1 /3 of the diabetic sample: Report "faking" urine test reports (37) Have to go to the bathroom more than other students at school (35) Feel they have too many dents and bumps on their bodies (35) Would rather eat something they "shouldn't" than tell people they have diabetes (33) Feel their nondiabetic friends would like them better if they didn't have diabetes either (33) Feel they would enjoy school more if they didn't have diabetes (28) Don't tell anyone when they're having a reaction (24) (D) Approximately 1/7 of the diabetic sample: Feel they have a lot of insulin reactions (15) Feel their diabetes is getting worse (15) Feel that their brothers and sisters tease them about having diabetes (15) State that sometimes when they are angry they forget to take their insulin (18) Feel that girls who have diabetes date less often than teenage girls who don't have diabetes (16) Report having friends that deliberately tempt them to eat food they "shouldn't" eat (14) Feel that people like them because they have diabetes (14) (E) Approximately 1/15 of the diabetic sample: Feel that it is harder to make friends when you have diabetes (8) Report enjoying insulin reactions (8) Feel that people who have diabetes shouldn't get married (7) Report "faking" insulin reactions (7) Feel that their friends tease them about their diabetes (7) Feel they have too many insulin reactions in general (6) Have friends at home that have diabetes (8)

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reflect negative adjustment responses. Section C responses were debatable. Assuming the accuracy of the expert team's judgments of positive and negative adjustment, this suggests that the majority of subjects in this study were relatively well adjusted. Six adjustment areas were factor analytically derived. They were: dependenceindependence issues, body image concerns, peer relationships, family relationships, attitudes toward health and diabetes, and school adjustment. The range for positive and negative adjustment scores was established according to median sample scores in each area (Table 2). This was done to facilitate statistical manipulation of the results so that comparative studies could be done with standardized scales. Pearson Product Moment Correlations were used to examine correlations between the six adjustment areas (Table 3). As indicated, significantly positive correlations existed between attitudes towards diabetes and dependence-independence issues (0.946); total adjustment score and attitudes towards diabetes (0.946); total adjustment score and peer relationships (0.813); total adjustment score and dependence-independence issues (0.774); and attitudes toward diabetes and relationships with peers (0.753). Because lit-

erature on adolescence emphasizes the significance of peer relationships and dependency concerns, these results support the validity of the DAS, as well as our considerations about the importance of the adolescent girl's attitude toward diabetes as it relates to normal adolescent is-

DISCUSSION

The development of an instrument to assess adjustment in adolescent girls who have diabetes is a first step toward drawing the psychological aspects of juvenile diabetes beyond the realm of theory and case reports by providing a tool which may be useful in elucidating the construct. Although few conclusive statements can be made from this initial attempt, the results of this investigation suggest: (1) that the majority of diabetic adolescent girls in this study were relatively well adjusted; and (2) that attitude toward diabetes is an important factor to consider in the assessment of overall life adjustment. In a previous study of adjustment problems of juvenile diatetics, Swift et al. (18) found the diabetic child to be more abnormal than nondiabetic controls in a variety of ways. Their diabetic subjects showed significantly more pathology on

TABLE 2. naire

Determination of Positive and Negative Adjustment Range on Diabetic Adjustment QuestionAdjustment Range Mean 11.2 4.1 2.7 23.1 6.4 2.8 Median 11 4 3 23 6 3 SD 1.7 0.9 0.7 4.0 1.4 0.8 Positive 0-10 0-4 0-2 0-21 0-6 0-2 Negative 11-17 5-10 3-6 22-50 7-12 3-6 N 104 104 104 105 105 104

Peers Family School adjustment Attitudes toward diabetes Dependence-independence Body image

3-15 1-7 1-5 0-32 0-10 2^

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TABLE 3. Correlation Coefficients for Six Adjustment Areas School adjustment 0.26* 0.04 1.0 0.41* 0.24 0.14 0.46* Attitude toward diabetes 0.75* 0.39* 0.41* 1.00 0.74* 0.29* 0.95* Dependenceindependence 0.45* 0.36* 0.24 0.74* 1.00 0.27* 0.74* Body image 0.18 0.01 0.14 0.29* 0.27* 1.00 0.41* Total adjustment score 0.81* 0.55* 0.46* 0.95* 0.77* 0.41* 1.00

Peers Peers Family School adjustment Attitude toward diabetes Dependenceindependence Body image Total adjustment score *=p<0.001. 1.00 0.42* 0.26* 0.75* 0.45* 0.18 0.81* * = p<0.01.

Family 0.42* 1.0 0.04 0.39* 0.36* 0.01 0.54*

=p<0.05.

psychiatric classification, dependence- diabetic girl's attitude toward diabetes is independence balance, self-percept, man- positive, then adjustment in other areas ifest and latent anxiety, sexual identifica- will also be satisfactory. The nature of tion, constriction, hostility, and oral diabetesdaily requirements of insulin, preoccupation. In that investigation, activity, and food regulationrequires evaluation included psychiatric inter- that children and adolescents with diabview, psychological testing, interviews in etes adjust to a set of life circumstances the home with parents, and medical rat- that are different from those of the rest of ings of diabetic control. The contrasting the population. Accordingly, use of stanfindings of overall good adjustment in the dardized psychological adjustment scales present group of diabetic subjects raises for "normals" in the assessment of life adtwo important methodological questions: justment in people who have diabetes (1) Does directly addressing the issue of might not address an essential component diabetes in an adjustment scale like the of a diabetic child's life, i.e., his or her DAS provide the diabetic with an oppor- diabetes. tunity to more accurately describe his Table 1 results provide evidence that feelings about living with diabetes? (2) Is when given the opportunity, diabetic subthe self-report mode of psychological jects responded candidly to specific quesmeasurement the most appropriate ap- tions about their lives with diabetes. For proach to measurement of life adjustment example, 43% of the present group of in people who have juvenile diabetes? diabetic subjects answered "true" to the Results in Table 3 suggest the impor- statement "I feel embarrassed when I have tance of diabetes as a key variable in as- to refuse food." Another 51% of the subsessing life adjustment. As shown, signif- jects felt it was necessary to cover up the icantly high correlations existed between bumpy areas on their bodies with clothes; attitudes toward diabetes and peer rela- and 35% admitted to "faking" urine test tionships, family relationships, school ad- reports. This high percentage of "true" rejustment, dependence-independence con- sponses to personal questions seems parflicts, body image, and overall adjust- ticularly surprising (and commendable) ment. This suggests that if the adolescent in view of the normal desire for adolesPsychosomatic Medicine Vol. 41, No. 2 (March 1979) 123

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cents to conceal their true thoughts and actions. Interestingly, it appears that the lack of face-to-face contact offered by a questionnaire instead of an interview might account for the candid responses in this group of subjects. In their study of attitudes of diabetic girls and boys toward diabetes, Davis et al. (24) interviewed 58 diabetic children. On comparable variables, their results differed from those of the present study in the following ways: 98% of the Davis subjects told their friends that they have diabetes as compared to 69% in the Sullivan study; 1QO% of the Davis subjects told their teachers that they have diabetes as compared to 60% in the present study; and 85% of the Davis subjects felt that people with diabetes should get married as compared to 93% in the Sullivan study. Although other variables such as age, sex, and study population size may contribute to the differences in results, Davis speculated that some of his subjects may have tended to present themselves in a good light. The differences in results in these two studies point to the advantages of selfreport inventories. Wilde (25) cautions that in using the self-report mode of psychological measurement, one assumes the validity of the inventory premisethat the subject can and will accurately describe his relevant feelings and behaviors. A number of studies have indicated that this may not always be the case. Social desirability is cited as a frequently mentioned bias. However, although the present group of diabetic subjects may have chosen socially desirable responses, the possibility also exists that not pleasing the investigator is socially desirable for a healthy, rebellious adolescent. The self-report mode of measurement has several advantages, particularly with respect to the DAS. First, the DAS has the
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potential to provide a standardized consistent measurement of adjustment that would not be sensitive to the theoretical orientation, idiosyncrasies, or inconsistencies of the clinician administering it. Second, continued use of a self-report scale like the DAS would involve economy of professional time. The DAS could be administered by paraprofessionals and used as a screening device to determine those patients who would require additional professional time. Then, it could be used by the clinician as an additional source of information regarding the presenting and changing status of the patient. Third, when standardized, the scale could be used for research purposes to facilitate our collection of hard data about juvenile diabetes and how it influences lives. Although this correlational study appears promising, considerable work remains in refining the conceptual principles and providing validation of the instrument. Adjustment has not been defined here. This is due primarily to the author's belief that not enough data has been systematically collected from clinicians who treated people with diabetes. Norms were established for the present study. However, until we have uniformly collected data from children and adolescents about their thoughts and feelings about the impact of diabetes on their lives, it is difficult to define "diabetic adjustment" or "maladjustment." Concurrent use of sociometric techniques and /or clinical evaluation would be particularly useful in assessing the concurrent validity of the DAS. It is hoped that concomitant continued use of the DAS and development of open professional attitudes toward diabetes could help prevent the labeling of what we think is maladjustment in people who have diabetes. The researcher who may consider using this instrument should be alert to its clear

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limitations. All subjects were female adolescents who were studied at a camp for girls who have diabetes. While campers were referred from a variety of sources ineluding clinics, private physicians, and mental health facilities, the possibility exists that the socioeconomic make-up of the camping population differed from the diabetic population as a whole. In addition, the theoretical basis for the scale primarily concerned issues of diabetes and adolescence. Revisions would be needed to make the test suitable for use with other populations.
REFERENCES

The author wishes to acknowledge Catherine Forrest and Madelon Visintainor for their valuable comments and encouragement. Special thanks are also due to Betty Kruczek, Pat Kline, Nancy Hedlund, Sue Bates, John Lewis, Clare Paradise, camp and schooJ personnel, the adolescent girls, and family and friends for their interest and support, This investigation was partially supported by National Institute of Mental Health Grants, 2T01 MH 07903-13 and 5T01 MH 07930-14.

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