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Controlled studies or clinical series of other chronic medical disorders that commonly begin in childhood or adolescence (e.g., diabetes, juvenile arthritis, and asthma) are few. Two studies explored sexual functioning in adults with diabetes. Schreiner-Engel, in her study comparing 23 type II diabetic women, 35 type I diabetic women, and 42 healthy control subjects by using interviews to assess all aspects of sexual response activity, dysfunction, and satisfaction, found that type I diabetes had little effect on these parameters, but that type II diabetes had a pervasively negative effect on almost all aspects of sexuality.³⁰ On the other hand, Jensen et al., in their study of adults with diabetes compared with control subjects, found no differences between the groups in terms of sexual dysfunction.²⁹

Sexual problems associated with other chronic medical illnesses in adolescents have been explored even less. One study of the psychological adjustment of young adults with juvenile arthritis that used semistructured interviews and questionnaires found evidence of depression and poor body image in these patients.³¹ Most studies have used clinical populations as convenient research samples. However, a recent, large population-based survey that used a self-report questionnaire for 7th through 12th graders, comparing adolescents with chronic illnesses (diabetes, asthma, seizure disorders) with healthy control subjects, found that although no statistically significant differences in terms of rates of sexual intercourse, birth control use, sexual abuse, or sexual orientation between the groups existed, the chronically ill teenagers were at greater risk for sexually transmitted diseases and sexual abuse.³² These results suggest that although there may be little behavioral difference in a nonclinical population of chronically medically ill adolescents and other adolescents, there are additional medical and psychological risks. Another population-based sample of 2,149 adolescent boys and girls with chronic illness that used a self-report survey design found that there were significant differences between the adolescents with chronic illnesses and control subjects in terms of body dissatisfaction and unhealthy weight-loss practices.³³

Existing data support the idea that adolescents with physical illnesses experience problems with psychosexual development in response to these conditions. Studies on the whole explored sexuality in the context of larger psychosocial dynamics rather than specific exploration of sexual issues of adolescents with medical problems. Controlled studies are few, have small sample sizes, and mostly use convenient clinic populations. Much of the psychosocial research that is available approaches the issue of sexuality indirectly through assessments of self-esteem, body image, and social role performance. Nonetheless, many studies found that physical illnesses have an impact on overall psychosocial and sexual development in a variety of ways, including physical, social, and emotional components.

CLINICAL APPROACH TO PSYCHOSEXUAL PROBLEMS IN MEDICALLY ILL ADOLESCENTS

 
Remschmidt has conceived of adolescence as devisable into "early" (11–13 years), "middle" (14–16 years), and "late" (17–19 years) phases, with developmental tasks assigned to each phase.^34,35 I have used this overall scheme to present how psychosexual issues can be seen in relationship to each of these phases.³⁶

Early Phase In the early phase, the most significant sexual issues are concerned with physical changes associated with puberty itself. These issues include attractiveness, body size, and maturational rate and how these factors relate to self-esteem and body image. Some studies suggest that these issues are processed somewhat differently for boys than for girls, at least in our culture.³⁷ Girls generally are more concerned with maturing too early, being overweight or too tall, and not perceived as attractive.³⁸ Boys, on the other hand, are more concerned with maturing late, being too small or too short, and not strong enough.³⁹

In our experience with physically ill adolescents, the most significant sexual problems reported in the early phase of adolescence are governed in large measure by the impact that their illness or its treatment has on their pubertal development. These effects might include influences on the timing of puberty and associated secondary sex characteristics, body size, or the development of dysmorphic physical features. There are a number of examples of medical illnesses that affect the timing of puberty. The endocrinopathies and intersex anomalies are two examples.^11,40

A secondary effect of changing the timing of puberty is the impact this may have on height and weight. For girls, illness or treatments that cause weight gain or facial changes are particularly troubling during this phase. Recent reports of diabetic teenage girls abusing insulin to control weight is an example of this type of problem.⁴¹ For boys, body size is also important, especially at this phase, because small stature and excessive thinness may be a significant source of sexual and gender-role anxiety. For boys, illnesses or treatments that make them shorter or thinner have a powerfully negative impact on their developing image of themselves as sexual and male. Boys who experience these difficulties may express concerns that these delays and changes indicate that they are feminine or will be homosexual. Other boys may not have this concern but still will attempt to withdraw from sexual developmental processes because of embarrassment and fear of humiliation. An example of this is seen in a boy with CF.

Case Report

Brad was a 13-year-old boy with CF. He maintained a weight well below that of his peers that resulted in delaying the onset of puberty. Compared with boys his own age, Brad was shorter and more physically immature. This made him the target of harassment from male peers. Although he had struggled with medical problems associated with CF for much of his life, the social consequences of his illness had only recently become critical to him. He began to stay away from school and became increasingly isolated even from peers who had been more supportive. He was ashamed of his body and tried to avoid any consideration of sexual thoughts or behaviors. He described his body as skinny, ugly, pale, weak, hairless, and unmanly. He wore bulky clothes and refused to swim or be seen unless wearing long pants and long-sleeved shirts.

Middle Phase In the middle phase of adolescence, sexual issues as they relate to peer relationships intensify. Sexual issues of this period include dating competence, increased subjective awareness of sexual orientation, and exploratory sexual experiences. Another issue that may complicate sexual development in this period is separating from family. Responses to this separation may include guilt, fear of abandonment and, at times, angry and rebellious feelings. Repression, avoidance, and denial of sexual impulses may be approaches to this difficulty; on the other hand, acting out, promiscuity, or other reckless sexual behavior are other examples. ⁴² This phase is further complicated by increasing comparisons of oneself to the peer group. This can lead to problems with psychosexual development when these comparisons result in negative self-appraisals that cause lower self-esteem and poor self-worth.

In our experience in the middle phase of adolescence, sexual problems are often a secondary phenomenon resulting from impediments to developing peer groups. This leads to difficulties in sexual development in the medically ill because of increased dependency on family members and institutions for care; increased periods of isolation from peers due to physical illness; decreased capacities for sexual behavior due to acute or chronic health limitations (e.g., infections, injury, energy, medications side effects); and increased shame about the illness and its impact on psychosocial functioning.⁶ If a genetic etiology is involved, then increased familial guilt can lead to an angry, enmeshed dynamic that effectively stifles sexual emancipation and exploration that are essential to working through this phase of adolescence.⁷

Case Report

Blair had been a popular 15-year-old girl in her public high school, until she began having seizures early in her sophomore year. A formerly highly social person, she began to withdraw from her previous activities that included cheerleading and field hockey. Although her seizures were well controlled, she said that she was afraid of having a seizure during these activities. She also withdrew from her friends and retreated to her family, who she felt would understand her because her father also had epilepsy. Her parents were relieved that she was home. Blair had a boyfriend with whom she had begun early sexual exploration. Soon after the diagnosis of a seizure disorder was made, though, Blair refused to be alone with him. She was afraid that if she had a seizure she would be "hideous and repellant." She was particularly afraid of losing bladder and bowel control in front of him. She stated that she could not imagine having a boyfriend in the future.

Adolescents with seizure disorders are often ashamed of an illness that can cause them to be out of control in any number of ways at unpredictable times.⁴³ In addition, the medications required to treat epilepsy can interfere with social activities, and side effects can inhibit both physical and sexual functioning.⁴³  Sometimes medically ill adolescents are not allowed to drive, which further interferes with social activities.

Teenagers with oncologic illness demonstrate another aspect of this middle developmental stage's difficulties for a medically ill adolescent. These teens often have increased dependency on family members and become socially isolated from their peers because of lengthy hospitalizations.⁵ They also often experience side effects of treatment that alter appearance and lead to body-image distortions. This can lead to avoidance of peers, family enmeshment, and infantilization of sexual drives.⁴⁴ In addition, increased shame about the body, lower sexual self-esteem, higher sexual anxiety, and reluctance to explore sexual intimacy may develop.¹⁵

Case Report

Fernando was a 15-year-old boy who had a kidney transplant after being diagnosed with renal cancer when he was 13. His single-parent mother was the donor. Prior to his transplant, he was a popular boy at high school who was active in sports and had a girlfriend. Fernando was hospitalized for several months at the time of his surgery and had been rehospitalized for several weeks on 4 subsequent occasions for rejection. While at home after the fourth hospitalization, he had begun to refuse to take his immunosuppressant medications and was hospitalized for treatment noncompliance. It became evident quite quickly that Fernando was emotionally regressed and angry. His mother was anxious about him and restricted both his social and physical activities beyond what was medically necessary. Fernando himself experienced both a measure of relief at being kept from adolescent social activities and anger at being so removed. He showed significant signs of depression. During psychiatric interviews, he admitted to feeling ashamed of the physical changes in his body since the surgery—scars, unwanted body hair, and increased fat on his face and body, making him appear "childish." He felt unattractive sexually and was angry at having to live with "this body that no girl would find attractive." He felt he was "doomed" to live with his mother forever, and although he wanted to have a girlfriend and begin to explore his sexual needs, he could not imagine actually doing this.

Late Phase

 
In the late phase of adolescence, sexual issues are principally those that involve practicing for deeper interpersonal intimacy. This phase is characterized by increasing wishes and ability for emotional and sexual intimacy and fewer needs for a familial base. Incompletely resolved issues from early phases of sexual development, including continued excessive emotional or physical dependency on parents or family, continued anxiety about sexual abilities or body image, or continued social withdrawal, may be present in the late phase.

In our experience, key sexual issues for the medically ill adolescent in the late phase are concerns about decreased life span, fertility, anxiety about transferring dependency needs from families onto intimate partners, and the potential for genetic or infectious transmission of disease. Because of their ongoing and likely chronic dependency on their families to assist with physical limitations, disability, and pain, these teenagers sometimes have difficulty developing adult roles required for sexual intimacy. Families may continue to be overprotective. The experience of an adolescent with hemophilia illustrates the issues of this phase.

Case Report

Tony was an 18-year-old male with hemophilia who had experienced repeated hospitalizations for pain and bleeding episodes throughout his adolescence. He had missed most of high school because of this, though he completed an equivalent educational process at home. His father had abandoned the family when Tony was a boy, and he and his mother had developed a close, if sometimes turbulent, relationship that veered from overprotection to threats of abandonment. At age 18, Tony had no sexual experiences and had few friends. He was aware of his own anger at his parents for "giving me this illness," and felt a deep ambivalence about procreation. He felt he was unattractive and unlikely to ever find a mate. He was increasingly despondent and refused to interact with anyone whom he had not known for many years.

CULTURAL FACTORS

 
In addition to developmental factors, it is important for the clinician to keep cultural factors in mind when working on issues of sexual behavior. Today, especially in regions where many cultures interface, variations between and among cultures can increase an adolescent's confusion about how to understand sexuality and sexual behavior. Parental attitudes based in various cultural belief systems can be at odds with the prevailing peer group attitudes of their children, adding to the confusion. Clinicians working with child and adolescent sexual problems need to be aware of parental cultural belief systems to facilitate solutions to evolving conflicts among family members in these areas.

INTERVENTIONS

 
The emphasis in our review has been on a developmental view of adolescent psychosexual processes. Interventions should reflect this perspective, identifying what adolescent's psychosexual developmental needs are at the time of evaluation. A number of authors have published general approaches to interviewing and intervening with adolescents on sexual issues.^45–46 These basic approaches emphasize directness, developing safe boundaries, and confidentiality. Specific interventions that address issues from each phase of adolescence are appropriate when working with medically ill adolescents who have sexual issues.

Early Phase In this phase, the sexual issues associated with pubertal development should be addressed.³⁵ This is often complicated by issues of shyness and embarrassment as well as shame. Approaches that use a supportive and matter-of-fact stance that directly convey necessary information about the developing sexual body are best. Adolescents in this phase are curious and confused and often have little in the way of perspective on sexual experiences. They both misconstrue and convolute information that they are given. When an adolescent's pubertal development is being directly affected by either a disease process or treatment, the clinician should work with the pediatrician to ensure that the adolescent's sexual anxieties are addressed. From girls, expect concerns about excessive weight gain and other external markers of illness, as such changes will likely exacerbate existing concerns. From boys, expect concerns related to sexual orientation, gender role anxieties, genitalia, stature, and musculature.⁴⁷

Besides information and support, some adolescents with particularly difficult sexual dilemmas, such as those associated with endocrinopathies, will need longer-term psychotherapeutic treatment to assist them with the surgical, hormonal, and behavioral limitations of their sexual lives. It may also be during this period that problems arise from surgical and/or hormonal treatments undertaken when the child was younger. Adjustments to these prior treatments may considerably complicate pubertal issues.

Middle Phase Adolescents in the middle phase have adjusted to puberty but are highly involved in the social aspects of psychosexual development. Interventions with adolescents in this period often begin with educating the parents about the need to allow this sexual socialization to take place. In addition to education, some parents require a deeper understanding and resolution of their own involvement with their developing adolescent. The teenager must also be supported in the process of giving up the family of origin to explore the lesser known, but critically important, social world of peers.³ When chronic illness requires intermittent hospitalizations and results in removal from peers, the clinician needs to help the adolescent keep the process of psychosexual development on track to the extent possible. Strategies to do this include using peer illness-support groups, linkages with teenagers in other hospitals via the Internet or video linkages, and therapeutic support for the use of fantasy as well as reading materials and movies related to sexual themes and exploration appropriate for adolescents.

Late Phase Adolescents in the late phase of sexual development have accepted that they are sexual beings, are able to separate successfully from their families, and have developed a peer group with whom to explore sexual issues. The challenge in the late phase is to take this to a more intimate level with another person. Adolescents with chronic illnesses are especially vulnerable at this stage because they now have a more developed capacity to see the implications of future physical and sexual limitations. Guilt about their future dependency, heritability of their illness, inability to have children, or likely early death complicate the quest to create these more intimate relationships.²⁰ The clinician working with adolescents in this phase should expect that these issues will complicate sexual relationships and behaviors. Addressing these issues in the context of psychosexual development, however, is often avoided or minimized. Psychotherapeutic strategies to address guilt, shame, and grief need to be individually developed to meet the circumstances and personality structure of each patient.

DISCUSSION AND CONCLUSIONS

 
Although existing systematic studies of the impact of chronic illness on psychosexual development and behavior are few and conclusions from these studies are limited, most suggest that adolescents with medical illnesses are undereducated about sexuality, socially restricted, and have varying levels of concern about their bodies and sexual attractiveness.These data suggest that it is important for the clinician to evaluate and assist adolescents with medical illnesses with these concerns.

We have suggested a clinical approach to adolescents with these problems using a three-phase model of adolescence. In the early phase, problems associated with delays in puberty and physical changes associated with taking up expected gender roles are paramount. In the middle phase, problems with limited socialization opportunities, particularly as they limit dating, and sexual exploration are central concerns. In the late phase, problems with assuming adult roles, especially marital and parental roles, in the context of chronic medical limitations are foremost in importance. By assessing the phase of adolescent psychosexual development and designing a strategy that is appropriate to the concerns of an adolescent in that phase, the clinician is more likely to focus interventions on the needs of the adolescent at that time.

The paucity of data on the sexual needs of adolescents with chronic illness continues to be an impediment to developing appropriate interventions. There is a need to research how best to screen, treat, and understand sexual needs of adolescents with physical illnesses. Opportunities for this type of research are present in many medical centers where adolescents with chronic medical conditions are treated. Consultation-liaison psychiatrists, psychologists, and social workers who work in these centers are in a position to advance our understanding of adolescents with these problems.