ADOLESCENCE, broadly defined as the second decade of life, is a developmental stage characterized by myriad changes in physical, psychological, social, and spiritual domains.1 Adolescents with chronic health conditions, like all adolescents, are sexual beings. A number of factors make sexual health promotion essential to their health and well-being. The challenge to parents, teachers, and healthcare providers is to meet these adolescents' needs for accurate information and expanded opportunities to attain sexual maturity in ways that are safe, promote their health, respect their needs for privacy, and do not insult their intelligence. The purposes of this article are to define sexual health, describe briefly the domains of adolescent development, identify the sexual health needs of adolescents with a variety of chronic health conditions from a developmental perspective, and to suggest ways in which those needs may be addressed.
SEXUAL HEALTH DEFINED
Sexual health is more than the absence of unintended pregnancy, date rape, genetic defects that make sexual assignment difficult at birth, sexually transmitted diseases (STDs), or other negative events or conditions. Sexual health is a positive state that reflects an individual's synthesis and expression of gender, biological structure and function, identity, social roles, relationships, and behaviors.2 During adolescence, developing sexual health refers to the process by which a person integrates several dimensions of self as a person becoming sexually mature with a distinct sense of gender identity, confident of one's roles in society, and capable of intimate relationships and responsible sexual behaviors. However, for the adolescent with a chronic or disabling condition, this integration is complicated by the nature of the disease or disability, the age of onset of the condition, the number of comorbid conditions, how the youth's family has adapted to the condition over time, and the messages that the youth has internalized from peers and media. It may be that sexual health is more difficult for adolescents with chronic and disabling conditions than for their peers.
People with chronic health problems who, a generation ago, might not have lived through puberty are now living longer. In adolescence, they have the same rights to enjoy and celebrate their sexual maturity as any other adolescent, but they face major threats to their sexual health and may lack opportunities to interact with adolescents who do not have disabilities and may experience severe social isolation. Adolescents with special healthcare needs resulting from these and other chronic health conditions usually have frequent encounters with healthcare professionals, but many such providers lack knowledge about adolescent development and human sexuality and, consequently, may lack the skill and motivation to promote sexual health among such adolescents.
ADOLESCENCE AS A DEVELOPMENTAL STAGE
The physical, psychological, social, and spiritual changes that occur in the second decade of life are critical for maintaining health throughout the life cycle. As Jessor and Jessor stated, this "period is something of a crucible for the shaping of later life."3(p5) In 1989, the Institute of Medicine published the report of a study committee in the Division of Mental Health and Behavioral Medicine to mobilize a national initiative to address research on children and adolescent with mental, behavioral, and developmental disorders.4 This committee acknowledged the importance of considering a developmental perspective when examining such disorders because "children are much more susceptible than adults to the influences of parents or other caretakers, peers and school, and the consequence of socioeconomic class. These environmental factors are also known to be critical in sustaining development."4(p70)
PHYSICAL DEVELOPMENT/ORTHOGENETIC PRINCIPLE
Physical development of the individual begins at the moment of conception. The individual becomes male or female, with or without congenital anomalies, in response to a genetic blueprint coded within the DNA. The orthogenetic principle means that the human being develops from lesser to greater differentiation of cells, tissues, and organs.5 Adolescence is the stage where sexual maturation or puberty occurs, thus rendering the individual capable of reproduction. The changes in secondary sexual characteristics of the individual occur within a social context and are accompanied by changes in cognition, social status, and behavior.
COGNITIVE DEVELOPMENT/GENETIC EPISTEMOLOGY
Jean Piaget identified the Genetic Epistemology framework to describe how people develop an understanding of the world and their place in it through reciprocal interaction with the environment. The stage of formal operations, which takes place early in the second decade of life, allows the developing individual to think abstractly and to consider hypothetical issues. This developmental milestone is critical in helping a person solve problems and in developing skills to manage various aspects of sexual maturity.6 Especially for the adolescent with a chronic illness or disability, cognitive development is essential to the process of transitioning from pediatric to adult healthcare services,7 in protecting one's physical safety, and in shaping how the adolescent will manage various aspects of their chronic condition.8 Increased capacity for thinking and reasoning also allows adolescents with chronic illness to begin to "give meaning to their particular condition in the context of existence."9(p423)
PSYCHOSOCIAL DEVELOPMENT/EPIGENETIC PRINCIPLE
Erikson described the stages of psychosocial development on the basis of the epigenetic principle. This principle is that "anything that grows has a ground plan, and that out of this ground plan the parts arise, each part having its time of special ascendancy, until all parts have arisen to form a functioning whole."10(p92) From this principle, Erikson proposed 8 stages of psychosocial development and featured a crisis or turning point for each stage that was critical to later stages. In Erickson's typology, the stages of adolescence and young adulthood are identity versus identity diffusion for the adolescent and intimacy versus isolation for the young adult.11 Although these stages are not discrete or linear, they do suggest that an adolescent's identity and interactions leading to increasing intimacy are characteristic of this developmental phase.
Psychosocial development of adolescents has been divided into 3 somewhat arbitrary phases. In early adolescence (ages 10-13), youths tend to show less interest in their families and more interest in peers, their emotions are labile, and they are preoccupied with their bodies and how these are changing. In middle adolescence (ages 14-17), their interest in peers increases, and they often have greater conflicts with parents as they struggle to gain independence. They become somewhat less preoccupied with physical changes, are more capable of abstract thinking and reasoning, and begin to feel omnipotent. Some minor risk-taking behavior seen in early adolescence now becomes more prevalent as youth adapt to peer norms. In late adolescence (ages 18-21), an individual's identity becomes more firmly established. Youth of this age are less concerned about body image, have more realistic goals about their futures than at younger ages, and focus more of their time on developing intimate relationships with others.12 These stages are not necessarily fixed, but tend to overlap and are characterized by 4 milestones: (1) achievement of independence from parents, (2) adapting to peer norms, (3) acceptance of one's body, and (4) establishing identity in terms of ego, morality, sexuality, and vocation.12
Other theorists have focused on human development as a function of environment. Bronfenbrenner's bioecological model focuses on a synergistic relationship between environment and genetics.13 For the adolescent, an inherited chronic health condition present from birth (eg, spina bifida) predicts some particular aspects of the individual's physical development and influences the people and environment with which this individual interacts. Developmental contextualism focuses on the development of the individual in relation to several social entities such as family, school, church, and community.14 The development of the adolescent is complicated by the presence of a chronic disabling condition and the understanding and acceptance of the meaning of that condition by significant others in one's social context.
SPIRITUAL DEVELOPMENT
Spiritual development in adolescence is not clearly conceptualized or described but may be salient to the meaning that adolescents and their families ascribe to chronic and disabling conditions. Spirituality and religiosity are terms that are frequently used interchangeably in publications focusing on health and health behaviors of youth.15 Crawford and Rossiter16 differentiate spiritual development from religiosity and note that the former includes ideals that help the adolescent determine how to manage life using heuristics rather than prescriptives. Religiosity, defined as participating in religious activity, has been shown to play a significant role in preventing coital debut,17 the development of risky sexual behaviors,18 and promoting health in adolescents.19
ADOLESCENT DEVELOPMENT AND CHRONIC HEALTH CONDITIONS
The Developmental Assets Framework is a framework that emphasizes strengths and positive building blocks in the process of human development.20 The framework is based on the salience of environment as an influence on adolescent behavior3 and incorporates developmental concepts derived from Developmental Contextualism13,14 as well as the resilience paradigm.21 The 40 assets of the Developmental Assets Framework are divided equally between 20 internal and 20 external assets.
The internal assets germane to promoting the sexual health of an adolescent with a chronic health condition are as follows: (a) accepting and taking personal responsibility; (b) believing in restraining from sexual activity, alcohol, and/or other drug use; (c) knowing how to plan and make choices; (d) resisting peer pressure and dangerous situations; and (e) having personal control over things that happen. These internal assets point the way to the need for comprehensive sexuality education for all adolescents. Adolescents who are becoming physically and cognitively mature become increasingly capable of taking personal responsibility for their actions, but they also must have personal control over things that happen to them. Adolescents with severe disabling conditions, such as body paralysis, have a distinct disadvantage in obtaining this last internal asset. As adult women with physical disabilities have reported, it is not uncommon to enter a relationship with a caretaker who becomes abusive and takes advantage of the disabled person's ability to control the situation.22 Even with health-promoting beliefs and communication skills, the disabled youth may not have the physical strength or ability to ward off an abusive caretaker or other social predator. Resulting sexual exploitation or abuse may increase the youth's vulnerability to unintended pregnancy and STDs. These youth need trusted adults in whom to confide.
Development of these internal assets may be a function of the factors that characterize a particular chronic health condition, such as the age of onset and severity of the disorder. They may also be a function of the resources available in the form of parents, teachers, and healthcare providers in the environment. In an attempt to provide protection, some well-meaning adults may actually provide too much care for adolescents, making them depend upon their caretakers when they need to develop a greater capacity for self-care and self-management of their chronic health condition.23 Development of these internal assets depends, to some extent, on the presence of external assets.
External assets of particular importance in promoting sexual health in youth with chronic conditions are as follows: (a) positive family communication in which the adolescent willingly seeks parental advice; (b) a caring and encouraging school environment; (c) safe school and neighborhood; (d) parents and other adults who model positive, responsible behavior; and (e) a family that provides love and support. These particular assets are ideal for all adolescents.20 Without these assets, however, adolescents with or without chronic health problems are vulnerable to sexual victimization and exploitation at the hands of parents, trusted adults, and peers.
VARIABILITY OF CHRONIC HEALTH CONDITIONS IN ADOLESCENTS
Approximately 1 of every 5 adolescents has some type of health condition requiring special services.24 Motor vehicle accidents, the most common cause of death and unintentional injury in adolescents, may result in brain damage or paralysis. Such injuries are often the outcome of adolescents engaging in increasingly more risky behaviors such as substance use as they get older.25 The most common chronic conditions leading to limitation of activity for those in the second decade of life are learning disabilities and Attention Deficit Hyperactivity Disorder,26 while cerebral palsy and spina bifida, which are present from birth, affect the entire development of the individual. Those that occur later in life take their toll after a specific level of development has already been achieved. Thus, health professionals, teachers, and parents who want to promote sexual health in the large number of adolescents with chronic health conditions must acknowledge these developmental differences and understand how other factors modify the impact of chronic conditions on the developing adolescent.
FACTORS THAT MODIFY IMPACT OF CHRONIC CONDITION ON ADOLESCENT DEVELOPMENT
Age at onset
Conditions that originate at birth and early childhood have profound effects on parental expectations, which may influence the trajectory of the disease or injury and the child's response to it. Moreover, many of these children grow up feeling different, stigmatized, or trying to hide visible differences.8 In contrast, a condition that is first diagnosed in middle or late adolescence may have a different impact on parents and greater significance to the individual with the condition who is now old enough to understand the implications of the diagnosis and to realize that his or her life has changed in some dramatic way that requires them to alter their own expectations about education, career, intimate relationships, and independent living.27 It may also mean that the individual has had a longer time to achieve a sense of normalcy and competence.
Adolescents who grew up with a diagnosis of cystic fibrosis talked with researchers about their gradual awareness that they were different from other children and how reducing this difference was important to them. They spoke about "keeping secrets," particularly when they started developing intimate relationships with others. This need to keep their diagnosis a secret, however, was met with some ambivalence as can be heard in the words of this girl, speaking about her boyfriend: "He doesn't know because I really don't want to tell him yet. Well, everybody I've told, like they break up with me, and so I don't want to tell him because I really like him[horizontal ellipsis]but[horizontal ellipsis]I want to tell him."8(p7)
When a chronic illness is diagnosed in middle adolescence, the effect on the individual's social development can be devastating. In this stage, adolescents try to become independent from parents, form a unique identity, and connect with peers. Consequently, adolescents who develop chronic conditions in middle adolescence often act out by refusing to adhere to medical treatments and therapies and are vulnerable to bouts of depression and anxiety that may compromise their mental and sexual health.27 When adolescents were interviewed about taking medications for epilepsy, they told researchers that they refused to adhere to medical regimens to avoid stigma from friends and to exert personal control and self-regulation over their condition.28 This universal developmental need for normalcy and control in adolescence is critical for promoting the sexual health of adolescents with chronic illness or disabling conditions.
Nature and severity of condition
Several other characteristics of the chronic condition also influence an adolescent's adjustment to that condition: (1) duration, (2) visibility, (3) mobility, (4) limitation of age-appropriate activities, (5) cognition, (6) sensory, emotional, and social functioning, and (7) expected course and survival. The more complicated, visible, and limiting the disorder, the more difficult the adjustment. In addition, the nature and severity of the condition may affect how the individual copes with impairment, limitations, and uncertainties.29 In particular, these aspects of the chronic health condition may affect puberty and threaten healthy sexual development.
Comorbid conditions
Many individuals have multiple chronic health conditions, making each condition more complex than if it were the only one.27 Other modifying factors (eg, age at onset and nature and severity of the condition) may have synergistic effects when there are chronic comorbidities, making the social and emotional aspects of development even more challenging.
SEXUAL HEALTH IN ADOLESCENTS WITH CHRONIC HEALTH CONDITIONS
Adolescents with disabilities have historically been treated as if they were asexual, oversexed, or sexually uncontrollable.30 Depending on the type of disability, parents may be concerned about autoerotic behavior, signs of secondary sexual characteristics, genital hygiene, unplanned pregnancy, STDs, and sexual abuse or exploitation. Unless healthcare providers offer anticipatory guidance to these parents and model affirming responses to the adolescent, promoting sexual health within the family can be an overwhelming responsibility for families. Similarly, teachers and other adults who regularly encounter such youth may also be poorly prepared to support the healthy sexual maturation of these youth.
Analyzing Wave I data from the National Longitudinal Study of Adolescent Health (Add Health, a nationally representative sample,), Cheng and Udry31 identified 1,153 adolescents who were physically disabled (eg, permanent physical disability, uses a brace, cane, walker wheelchair, or scooter, or has an artificial limb) and studied their experience with sex education at school, knowledge about contraception, attitudes about sex, and experiences with romantic attraction. These researchers concluded that adolescents with physical disabilities were slower in pubertal development and more socially isolated than their able-bodied peers. While their exposure to school sex education and level of sexual experience were not significantly different from that of their peers, disabled males were less informed about birth control and disabled females were more likely to experience forced sex than their peers. These findings raise important questions about meeting the sexual health needs of these vulnerable youth.
The American Medical Association's guidelines for adolescent preventive services include 2 relevant recommendations. These are that all adolescents should receive health guidance (1) that will help them understand their own physical growth, psychosocial and psychosexual development, and be "actively involved in decisions regarding their healthcare" and (2) "annually regarding responsible sexual behaviors, including abstinence."32pxxx-xxxi) This guidance includes counseling about abstinence to prevent pregnancy and STDs, the effectiveness of latex condoms, reinforcing responsible sexual behavior, and the need for youth to protect themselves and their partners from STDs and sexual exploitation. Moreover, these guidelines suggest that parents or their surrogates "should receive health guidance at least once" during each of 3 phases (early, middle, late) of adolescent development.32(p13)
The decade of adolescent development is fraught with internal and external obstacles. Those adolescents who have severe chronic and disabling health conditions experience the same physical, psychosocial, and spiritual changes as those adolescents who are relatively healthy and able-bodied, but these changes are complicated by their condition and interpreted differently by adults charged with their care. Both groups can benefit from education where they receive accurate information and learn skills that enable them to live sexually healthy and responsible lives, an education that is often hard to find in a society with conflicting values about how to promote healthy development.
CONFLICTING SOCIAL VALUES ON SEXUAL HEALTH PROMOTION
The current political climate holds that abstinence until marriage is the "only" way to prevent unplanned pregnancies and STDs. Educators and parents are encouraged to align with religious right advocates who would prevent American adolescents from being able to access information and services essential to their sexual health. This pervasive atmosphere of control is in sharp contrast with the prolific sexual messages American adolescents receive through various media, a situation aptly identified as the "paradoxical depiction of sexuality."33(p8) For example, Cope-Farrar and Kunkel examined the 15 television shows most often watched by American youth 12 to 17 years of age. Sexual content of the shows was defined as "any depiction of talk or behavior that involves sexuality, sexual suggestiveness, or sexual activities/relationships."34(p63) They found that 82% of the 45 programs sampled contained either sexual behavior or sexual talk, averaging 11.1 sexual interactions per hour. While most of the sexual behavior in these programs was modest, the researchers also noted that the risks of negative outcomes (eg, STDs or AIDS) and protective mechanisms were rarely portrayed. Critical aspects of sexual decision-making were also ignored.
For the past 40 years, the Sexuality Information and Education Council of the United States, a not-for-profit organization, has illuminated the needs and rights of individuals to have accurate information about sexual development, behavior, and health,35 including several articles on sexuality and disabilities. It has promoted increased accessibility of information for persons with disabilities and has offered support to parents with disabled children.36,37 It published a position statement on sexuality for persons who have physical, emotional, and/or cognitive disabilities, affirming that these persons have rights to sexuality education, sexual healthcare, opportunities for socializing and sexual expression, information on minimizing the risk of sexual exploitation and abuse, and access to healthcare services and benefits without discrimination.29
Researchers and practitioners working with adolescents who have chronic and disabling conditions acknowledge the adolescent's need for explicit knowledge about their condition, the prognosis, and its impact on sexual maturity and behaviors. Because these youth need to be involved in making decisions, parents and professionals should communicate with them in a way that acknowledges their stage of development, understanding that the timing of sexual behaviors, including coital debut, use of contraceptives, and unplanned pregnancies among adolescents with chronic conditions is no different from the timing among adolescents in the general population.30,38
PROMOTING SEXUAL HEALTH IN ADOLESCENCE
An important first step in promoting the sexual health of all adolescents is building consensus among health professionals, parents, and other adults in a given community. Professionals and parents who understand child and adolescent development know that waiting until adolescence to provide basic sex education is to miss many opportunities to incorporate healthy attitudes and behaviors about sexuality into the daily lives of children. Sexuality education is best when it is provided in response to children's natural and expanding curiosity about their bodies and those of the people around them.39
Promoting sexual health of adolescents with chronic health problems or disabilities is an even greater challenge because of the vast variability of these conditions in the adolescent population. While adolescents with such conditions desire to be seen and treated exactly like their nondisabled peers, many sectors of society, including parents, teachers, and many health professionals, may inadvertently thwart the efforts of these adolescents to become fully mature as sexual beings.23 Many more adolescents with chronic conditions are now facing the transition to adulthood. If their needs for sex education and sexual health promotion have not been met in childhood, these needs will present an even greater challenge during adolescence.
Healthcare professionals, parents, and other adults can be most helpful in promoting the sexual health of these youth by first assessing and acknowledging their own attitudes, knowledge, and behaviors with respect to human sexuality. As Khaxas claims, "sexual rights are human rights."40(p20) Sexual rights include the right to pursue happiness, respect the integrity of one's own body, express sexuality as independent from reproduction, and explore sexuality free from fear, shame, guilt, coercion, violence, and discrimination. Finally, Khaxas affirms that everyone has the right to sexual health, including "access to the full range of information and education on sexuality and sexual health, and the right to confidential health services of the highest possible quality."40(p5)
The time has come for practitioners at every level to be familiar with and support sexual health promotion in their daily interactions with adolescents who have special healthcare needs. This support begins with a thorough understanding of general growth and development with particular sensitivity toward the process of sexual maturation. When adults are uncomfortable with the subject of adolescent sexual maturity and behavior, this discomfort and anxiety may be quickly communicated to the adolescent. Healthcare providers may require special training in ways to assist parents who are uncomfortable and anxious so that both providers and parents are seen as external resources rather than burdens to these adolescents.30
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