Symposium on Adolescent Medicine
Social and Psychological Development of Adolescents and the Relationship to Chronic Illness Sandra R. Leichtman, Ph.D.,* and Stanford B. Friedman, M.D.**
I will not be a textbook will not be a specimen will not be degraded humiliated into submission by nurses, doctors, will not wear hospital "clothes" will wear my clothes during the day and my pajamas or nighties at night.
Written by a teenager with Marfan's syndrome
The perplexing nature of the adolescent is reflected in the numerous and variable physiologic, psychosocial, intraphysic, scholastic, legal, and chronologic criteria used in the definition. Viewing the adolescent from a psychological frame provides a means of integrating many of these criteria and aids in comprehending the process and duration of the adolescent period. With this in mind, Weiner lG suggests that "adolescence begins with the youngster's initial psychological reaction to his pubescent physical changes and extends to a reasonable resolution of his personal identity." The chronological span is thus usually between the ages of 11 and 21. Biological, emotional, and sociological factors influence these age boundaries. "'Assistant Professor in Psychiatry and Pediatrics, University of Maryland School of Medicine. Baltimore ':":'Professor of Psychiatry and Human Development, and Professor of Pediatrics. University of Maryland School of Medicine; Director, Division of Child and Adolescent Psychiatry, and Head, Division of Behavioral Pediatrics, University Hospital, Baltimore, Maryland Medical Clinics of North America - VoL 59, No. 6, November 1975
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PSYCHOSOCIAL DEVELOPMENT OF ADOLESCENCE The developmental tasks which the adolescent needs to master in the movement from childhood to the assumption of adult roles are (1) independence from parents, (2) establishment of sexual adequacy, (3) delineation of occupational and educational goals, and (4) establishment of a firm positive identity congruent with societal norms. The resolution of these tasks is a process which occurs throughout the adolescent period.5. 6, 10, 13 In understanding this process, it is helpful to divide adolescence into three stages, each with defining characteristics. Miller13 suggests that early adolescence be considered the period of puberty, middle adolescence the period of identification, and late adolescence the period of coping.
Early Adolescence The young adolescent is faced with the dilemma of seeking independence from parents while at the same time relying on them for emotional and physical support. In attempts to deny his dependency, the adolescent may need to view his parents as officious, incapable of understanding, and less than sage. The parent's attempts at communication may be met with the adolescent's demands for privacy sometimes punctuated with dramatically slammed doors. The adolescent's conflict over independence is evidenced in seemingly contradictary behaviors. An adolescent girl may refuse to listen to her parents' suggestions regarding study habits and then blame her mediocre grades on her parents who did not help her with homework. Unreasonable requests, for which the adolescent does not really expect parental compliance, may be made. The parent is placed in a bind and no matter what he decides, he will incur the adolescent's wrath, at least temporarily. If the father of a young female adolescent does not allow her to date, the father is viewed as domineering and untrusting. If the father sanctions the date, he is viewed as not caring sufficiently about his daughter to protect her from situations she may not be ready to handle. In their struggle for independence, young adolescents are particularly adept at using peer comparisons. Parents, provided with a biased view of how other "more reasonable" parents behave, must learn to be secure in setting appropriate limits on behavior. In early adolescence, physical growth and sexual changes occur at a rapid pace. These changes are confusing to the adolescent, who frequently wonders if he is normal and whether he can control the new and strange sexual feelings he senses. Factual information provided by parents and pamphlets may be less reassuring than comparisons of his own body to those of friends. Clumsiness accompanying rapid growth, unpredictable breaks in voice while speaking, and the response to sexual stimulation may threaten the adolescent boy's feelings that he can control his body. Temporary withdrawal from activities is often followed by active mastery of
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his concerns through participation in sports. In this arena he controls his body movements, feels pride in his prowess, and releases tension in a socially acceptable manner. Parents often support this coping mechanism, but have difficulty in understanding the boy's other means of dealing with his anxiety over body changes and control-off color hum or, fascination with pornography, and masturbation. The physician has multiple opportunities to promote optimal growth and development of adolescents. He should realize that the physical examination has special meaning to the adolescent patient: "Am I normal?" The adolescent will look for clues, especially from the reticent physician. A smile, a frown, or lengthy examination of an area all may arouse anxiety. The teenage patient may believe the physician can determine his sexual activity-real or fantasied-from his examination. In view of the adolescent's concern with his or her body it is important that the physician should always, in privacy, relate his findings, normal or abnormal, to the adolescent, and provide an atmosphere conducive for questions from the adolescent. The physician may wish to see each of his teenage patients as they enter adolescence by setting up a special interview. Matters of development and puberty may then be raised by the physician, including areas related to sexual activities and reproductive physiology. Parents may be included in a portion of the interview if the particular adolescent is comfortable with their presence. Of importance is the physician's attitude toward adolescents and their behavior. He must, for instance, be comfortable in undressing the teenager for proper examination-male physicians may hesitate to have the panties and bras of their female teenage patients removed. The physician must consciously avoid judging teenage behavior or comparing such behavior to his own adolescence. Such comparisons are as inappropriate as judging the normality of serum levels by comparing them with one's own biochemical status! In speaking with the young adolescent's parents, the physician can help them to understand and respect the adolescent's need for privacy, to set reasonable limits on the adolescent's behavior, and to recognize the importance of being available when the adolescent turns to them for help. Early adolescence is a difficult time for parents in that the adolescent's preoccupation with himself interferes with reciprocal interactions.
Middle Adolescence The universal turmoil, mood swings, and rebelliousness once attributed to the adolescent are not confirmed by studies of middle and late adolescents. 'o . 16 Instead research indicates remarkable resiliency and resourcefulness in coping with anxiety over separation and physical change and in learning more mature behaviors. For the early adolescent, preoccupation with body changes and seeking independence from parental domination may prevent meaningful investment in interpersonal relationships, while for the middle adolescent, decreased occupation with a less rapidly changing body permits in-
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tense involvement with peers. In turn, the adolescent's friends provide emotional security for the adolescent in his separation from parents. Adolescents support each other in experimentation with adult roles. Clubs and group projects provide a means by which the adolescent can learn to participate in interdependent and hierarchial organization which characterizes many occupational situations. Dating patterns lead to mutual exploration of heterosexual relationships. Close friendships help encourage sharing of thoughts and feelings. Within the give and take of peer relationships, the adolescent is able to explore personal values which are to become important to him as an individual. Rather than defining himself in terms of attitudes which are in opposition to his parent's values, the middle adolescent begins to develop internal standards of judgment in seeking answers to who he is, what he likes, and what his future goals are. In his attempts to maintain independence, the adolescent may argue with his parents over superficial issues, such as appropriate dress and grooming. The dominant values which the adolescent adopts, however, are usually closely identified with those of his parents who serve as important models. In a review of numerous studies of adolescent concerns, for example, it has been found that the adolescent's major concerns were with academic achievements, finances, and, with increasing age, philosophical issues of moral responsibility.lo. 16
Late Adolescence The late adolescent's previous experience with peer relationships enables him to apply social skills in attempting to master his environment and shaping his future. At the same time his parents are giving him increased responsibility and society is making increased demands. The adolescent whose education is completed at the high school level must often cope with the realities of economic self-sufficiency, independent living arrangements, and plans for marriage and child-rearing. For him, the consolidation of a positive and firm identity includes heterosexual love, occupational definition, and societal responsibility. While the adolescent in college is still preparing for his occupational role and economic self-sufficiency, consolidation of identity with respect to intimacy, positive self regard, and societal responsibility is nevertheless still possible.
INFLUENCES ON ADOLESCENT PSYCHOSOCIAL DEVELOPMENT The adolescent does not arise de novo nor does he develop en vacuo. Progression through the stages of adolescence to completion of the developmental tasks is influenced by the individual's previous emotional development, mental and physical abilities, current family relationships, and societal and cultural patterns. PREVIOUS EMOTIONAL DEVELOPMENT. The psychological tasks which should be mastered prior to adolescence include the development
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of a sense of trust, autonomy, initiative, and industry.5. 6 Thus, as an infant, the adolescent should have learned to delay gratification and tolerate frustration; as a toddler, to exercise discriminating control over his actions; as a preschooler, to feel comfort in exploration and assumption of sex appropriate roles; and as a school-aged child, to feel pride in his accomplishments. A child who has not been able to accomplish these tasks may enter adolescence demanding immediate gratification, doubting his ability to act autonomously, failing to achieve appropriate sexual identity, or feeling inferior to peers. The resultant deviant behaviors which may be anticipated in adolescence include delinquent acts, depression, obsessional behavior, hysterical symptom formation, and academic underachievement. INTELLECTUAL ABILITY. Intellectual limitations impede the adolescent's ability to perform age-appropriate scholastic and occupational tasks. Special programs to maximize the retarded adolescent's academic and occupational skills are available through school systems, institutions, and vocational rehabilitation centers. When intellectual ability lags significantly behind physical and sexual development, it is very difficult for the adolescent to comprehend his body changes. In addition, segregation in classes has already shown the retarded adolescent that he is different. Thus, the more capable adolescent's questions of whether he is normal may be magnified for the retarded adolescent. Confounding his problems are the concerns of the retarded adolescent's family and the community in which he lives regarding his ability to control his sexuality. Unfortunately, insufficient resources have been provided for programs in sex education for the retarded adolescent and his family.9 PHYSICAL CAPACITIES. Delayed maturation can prolong the dependence-independence struggle and reinforce feelings of being different. Also, the esteem derived from excelling in contact sports may be denied the late maturing adolescent male. The relationship of chronic :illness to adolescent development is discussed in detail in a later section. FAMILY RELATIONSHIPS. Current as well as earlier problems may impede the adolescent's psychosocial development. Parental support may not be readily available because of the parent's preoccupations with issues related to their own stage of development. Concerns over occupational esteem and aging may be prominent. Thus, a father disappointed with his own occupational attainment may make unreasonable demands on his son for achievement. In addition, many parents may have much of their time and energy consumed in caring and planning for an aged or infirm grandparent. SOCIETAL AND CULTURAL PATTERNS. Sociocultural mores and circumstances can greatly influence the manner in which an adolescent faces developmental tasks. Ghettos and other economically deprived environments may fail to provide proper models for the adolescent. Indeed, many adults living in such environments have not previously succeeded at their own adolescent tasks which results in the inability to proceed with the tasks of early adulthood - the ability for intimacy, close personal relationships, and sharing of feelings and thoughts with others.
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THE IMP ACT OF CHRONIC ILLNESS ON ADOLESCENT DEVELOPMENT Chronic illness refers to "a disorder with a protracted course which can be progressive and fatal, or associated with a relatively normal life span despite impaired physical and mental functioning."ll Causes of emotional stress may be related to the nature of the illness itself, to the attendent medical procedures, or to the emotional reactions of the ill individual and the family members to the illness. In a review of the literature of chronic physical disease in children, it was reported that typical parental reaction patterns include "guilt, grief, acceptance, chronic sorrow, and patterns of crises;" the child's responses include "feminization (of boys), depression, aggression and acting out, regression and increasing dependence, a feeling of inferiority, and withdrawal from social contacts."2 The problems sometimes created by chronic illness can provide difficult obstacles to the accomplishment of the psychosocial tasks of adolescence. The stresses produced by the adolescent period may in turn exacerbate the illness.
Independence from Parents The adolescent's illness can be used in the struggle for independence with potentially perilous consequences. Asthma attacks can effectively terminate a quarrel with parents, leaving the parents feeling impotent and reinforcing the adolescent's omnipotence. The adolescent's wish to view himself as self-reliant can interfere with his willingness to follow through with medical procedures. The denial of the need to rely on medication for example often results in exacerbation of illness. The adolescent who is continually reminded of his limitations is likely to become fearful of becoming independent lest he may not be able to care for himself. The parent can overtly or covertly sanction dependent behavior. For instance, the parents might encourage the adolescent to participate in age-appropriate "normal" activities but at the same time impose restrictions and prohibitions. Legal restrictions can interfere with the chronically ill adolescent's striving for independence. Attainment of a driver's license, for example, is a symbol of freedom for many adolescents. Those with seizure disorders, however, cannot apply for a license until they have been free of seizures for a prolonged period of time, ranging from 6 months to 4 years." The security provided by peer relationships as the adolescent attempts separation from parents is difficult for the chronically ill adolescent. Normal adolescents who are uncertain about their own physical adequacy may feel threatened by the physical disabilities of others their age and reject them as friends. In turn, poor peer acceptance delays adolescent development and produces emotional distress. Nonetheless, peer support can be used to help an adolescent adjust to chronic illness. Visits from friends and group discussions with other chronically ill adolescents should be encouraged when the adolescent is
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SOCIAL AND PSYCHOLOGICAL DEVELOPMENT lINGER, FRUSTRATION, DEPRESSION
,..-------PRODLnlS IVITl! PEER ACCEPTANCE
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INCREASED DEPENEENCE ON PARINTS SOCIAL m~1ATURlTY POOR SELF - U1lIGE DECREASLD COl-lFIDENCE FEAR or r AlLURE
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FAILURE TO PROCEED THROUGH ADOLESCENCE
Figure 1. Schematic representation of problems with peer acceptance encountered by the chronically ill adolescent.
hospitalized. Many physicians wisely make use of peer support in preparing adolescents for medical procedures. For example, Grushkin et al.~ encourages adolescent patients about to undergo hemodialysis to meet with peers already using dialysis. Where issues of illness and independence have become intertwined to the detriment of the adolescent's health and psychological adjustment, the physician can often provide helpful counseling. From the time of the initial diagnosis the physician should clearly specify which activities the adolescent can and cannot engage in. To avoid misinterpretations and misunderstandings, the adolescent and his parents should both be present for at least one of these counseling sessions. Questions and family discussion should be actively encouraged. Through his knowledge of psychological development of adolescents, the physician can anticipate possible problem areas and provide appropriate counseling. Before the patient and his parents leave the office, it is helpful to have them repeat what they have learned, for what the physician thinks he said is not always what is perceived. Finally, the adolescent and his family should be encouraged to call the physician's office when additional questions arise. For the patient who may be concerned about being a burden, this open invitation is imperative. When the adolescent attempts to use his illness as a means to gain power over his parents, it is important for the physician to indicate the self-defeating nature of this behavior, both in relationship to the struggle for independence and to the adolescent's health. The physician can reinforce those behaviors which make the adolescent less dependent, including caring for his illness.
Sexual Adequacy Physical growth and sexual maturation are frequently delayed as the result of chronic illness, leaving the adolescent vulnerable to fears of sexual inadequacy. Thus, while an adolescent may be able to participate in physical activity, he may request to be excused from gym classes to avoid the anxiety around exposing a body that is "different." For many chronically ill adolescents, the outlet for sexual and aggressive feelings provided by active engagement in competitive sports may not be available. It is important for the physician to emphasize which sports the adolescent can safely engage in and make this advice explicit to both the adolescent and his parents. It is not uncommon for adolescents to be restricted by parents far beyond what the physician
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meant to prescribe. A helpful guide to disqualifying conditions for sports participation is provided by Shaffer. 14 When participation in contact and endurance 'sports is severely limited, the adolescent can be encouraged to engage in other competitive ventures as, for example, marksmanship, debating, or chess. The adolescent may also participate in athletics as equipment and business managers. For adolescent girls, sexual adequacy is often measured in terms of physical attractiveness. Unattractive physical features caused by a disease process or required medication often pose a threat to self-esteem, sometimes resulting in promiscuous attempts to prove one's femininity. To reduce undesirable physical manifestations, the physician may need to schedule additional appointments to control the medication, and when possible explore alternate means of treatment. For adolescents with orthopedic defects, cosmetic surgery may be necessary.
Delineation of Occupational and Educational Goals Academic commitment is often difficult for the chronically ill adolescent. Frequent absences, malaise, and underachievement unrelated to physical disability often interfere with scholastic attainment. Adolescents with chronic illness may anticipate failure and therefore be less able to invest in academic challenges. Obstacles to higher education are presented by admission requirements, frequently unstated, of good physical health. Often the chronically ill adolescent may need the physician's help in writing a letter to the appropriate admission office emphasizing his capability for achievement and productivity. Chronically ill adolescents have limited professional choices because of prejudice against illness, in addition to the problems directly posed by the illness itself. Vocational resources to aid the early adolescent in identifying skills and talents which can guide him in choosing and preparing for appropriate occupational roles are lacking. U sdane 13 has noted that "although for more than 53 years the State-Federal program of vocational rehabilitation has responded to the needs of the disabled individual over the age of 16, there has been little assistance available for the handicapped child or young adolescent to prepare him vocationally. " Resources available to the physician for helping the adolescent consider appropriate occupational goals include occupational therapists and social workers as well as disabled adults who have attained occupational success. In addition, occupational exploration might usefully become a part of the hospital service provided during an adolescent's prolonged admission. Consolidation of a Firm Positive Identity In the formation of a firm identity, it is important for the adolescent to be able to incorporate his illness into his self image. While denial of certain aspects of illnesses (e.g., the possible fatality associated with leukemia) may be healthy and necessary for adjustment, recognition of limitations is equally important in the definition of self. Specific prob-
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lems encountered by the chronically ill adolescent involve low self esteem, unsatisfactory body image, and doubts regarding future selfsufficiency and the ability to assume the role of a parent. Even mildly disabled adolescents have notable problems with the consolidation of identity. For the chronically ill adolescent who does not feel or appear ill, but who must nonetheless submit to frequent physical examinations and sometimes hospitalizations, the acceptance of the disability as part of his self image may be particularly difficult. The marginally ill! adolescent wishes to engage in normal activities, but the realities of his disability may limit full participation. In addition, the adolescent with a relatively mild disability does not evoke sympathy and support from his environment which the more seriously handicapped person receives. Studies of patients with hemophilia,3 cardiac disease,7 and juvenile rheumatoid arthritis!2 document the considerable conflict in identity engendered by marginal disability. In his long-term relationship with the chronically ill adolescent and his parents, the physician should feel comfortable in providing counseling to help the adolescent (1) express feelings of inadequacy, (2) recognize social skills, academic successes, and talents which can provide avenues for pride in accomplishment, (3) explore occupational roles as well as secure special financial assistance available to the handicapped adolescent, and (4) carefully consider potential problems of child bearing including risks to health and genetic transmission.
CONCLUSION To be of maximal support to the chronically ill adolescent, the physician needs to be acquainted with the normal developmental problems of adolescence and the interaction between these difficulties and the additional psychological problems posed by chronic illness. Counseling of the adolescent and his family around disease-related adolescent adjustment problems can be undertaken by the physiCian, with financial charges apportioned to the time commitment. Referral to a psychiatrist or other mental health resource may be indicated with some patients, but the physician should realize that he has the unique ability to synthesize the biological, medical, and psychosocial aspects of a patient's illness into constructive management. Fractionating a patient's care into visits with the family physician and to a psychiatrist may be demanded by the degree of psychopathology in 'some adolescents, but does not relieve the primary care physician of always integrating that which is physical with that which is psychological, social, educational, or vocational. Social workers, occupational therapists, and educational specialists can be important resources to the physician in helping the adolescent to define academic and occupational goals. Each community publishes a resource list which is available to the physician on request. Advocacy programs for culturally disadvantaged and mentally retarded youth need to be extended to the chronically ill patient.
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Many children with chronic illness have been able to successfully cope with the problems posed by the disease and demonstrate good adjustment as young adults. With the support and guidance of his family physician, the chronically ill adolescent should be able to successfully accomplish the psychosocial tasks of adolescent development by incorporating his illness into his identity.
REFERENCES 1. Barker, R. G., Wright, B. A., and Gonick, M. A.: Adjustment to Physical Handicap and Illness: A Survey of the Social Psychology of Physique and Disability. Social Science Research Council Bulletin 55. New York, Social Science Research Council, 1953, revised. 2. Battle, C. U.: Chronic physical disease. Pediat. Clin. N. Amer., 22:525-531,1975. 3. Bruhn, J. G., Hampton, J. W., and Chandler, B. C.: Clinical Marginality and Psychological Adjustment in Hemophilia. J. Psychosomat. Res., 15:207-213,1971. 4. Castle, G. F., and Fishman, L. S.: Seizures. Pediat. Clin. N. Amer., 20:819-835,1973. 5. Erickson, E. H.: Childhood Society. New York, J. W. Norton and Co., 2nd ed., 1963. 6. Erickson, E. H.: Identity: Youth and Crisis. New York, J. W. Norton and Co., 1968. 7. Garson, A., Jr., Williams, R. B., and Reckless, J.: Long-term follow-up of patients with tetralogy of Fallot: Physical health and psychopathology. J. Pediat., 85:429-433,1974. 8. Grushkin, C. M., Korsch, B. M., and Fine, R. N.: The outlook for adolescents with chronic renal failure. Pediat. Clin. N. Amer., 20:953-963, 1973. 9. Hall, J. E.: Sexual Behavior. In Wortis, J., ed.: Mental Retardation and Development Disabilities (VI). New York, Bruner/Mazel, 1974. 10. King, S. H. L.: Coping and growth in adolescence. Seminars Psychiatry, 4:355-366,1972. 11. Mattsson, A.: Long-term physical illness in childhood: A challenge to psychosocial adaptation. Pediatrics, 50:801-811,1972. 12. McAnarney, E. F., Pless, 1. B., Satterwhite, B., et al.: Psychological problems of children with chronic juvenile arthritis. Pediatrics, 53:523-528, 1974. 13. Miller, D.: Adolescence: Psychology, Psychopathology, and Psychotherapy. New York, Aronson, 1974. 14. Shaffer, T. E.: The adolescent athlete. Pediat. Clin. N. Amer., 20:837-849,1973. 15. Usdane, W. M.: Vocational planning for the handicapped adolescent. In Downey, J. A., and Law, N. L., eds.: The Child with Disabling Illness. Philadelphia, W. B. Saunders Company, 1974. 16. Weiner, 1. B.: Psychological Disturbance in Adolescence. New York, Wiley Interscience, 1970. Division of Child and Adolescent Psychiatry Department of Psychiatry University of Maryland School of Medicine Baltimore, Maryland 21201