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Keywords:

  • self-esteem;
  • sexuality;
  • cancer;
  • adolescents;
  • young adults

Abstract

  1. Top of page
  2. Abstract
  3. Sexual Health in Adolescents and Young Adults With Cancer
  4. Self-Esteem and Adolescents and Young Adults With Cancer
  5. Self-Esteem and Sexual Health in Adolescents and Young Adults With Cancer
  6. Clinical Recommendations
  7. REFERENCES

A diagnosis of cancer compounds the complexities of adolescent development. Self-esteem and sexual health have a significant impact on adolescent identity formation, especially those young patients coping with a diagnosis of cancer. Knowledge of sexual health, interpersonal relationships, and body image concerns are factors that have an impact on the development of self-esteem during these transition periods into adulthood. A clinical perspective on these issues was utilized to highlight the nature of self-esteem and sexuality in adolescents and young adults with cancer. Case examples and clinical recommendations from a workshop on self-esteem and sexuality in adolescents and young adults with cancer are presented. Understanding the adolescent's and young adult's stage of identity formation, their social and developmental histories, and methods for increasing self-esteem can give insight to healthcare professionals in fostering positive self-esteem and sexual health in these young patients. Through the awareness of the specific factors affecting adolescents and young adults with cancer, oncology teams can assist in creating an atmosphere for the growth of positive self-esteem and sexual health in their adolescent patients. Cancer 2006. © 2006 American Cancer Society.

Adolescence and young adulthood are periods of development particularly susceptible to disturbance. Adolescents and young adults make the transition from childhood into adulthood as they develop physically, psychologically, sexually, and socially. Independence from family, identity formation, focus on appearance and self-image, development of intimate relationships, adjustment to pubertal growth, as well as establishing future goals are all hallmarks of adolescence and young adulthood.1 During adolescence, a large portion of self-esteem is derived from sexual identity.2, 3 Cancer, during this developmental period, may present certain challenges in establishing a positive sexual identity.4 Obstacles in accessing sexual-health knowledge, difficulties in interpersonal relationships,5–7 and body image concerns8, 9 may be hurdles that adolescents and young adults with cancer confront in pursuit of sexual health, which may, in turn, hamper the development of a positive self-esteem.10 The following is a clinical perspective for understanding the relationship between sexual health and self-esteem in adolescents and young adults with cancer. In addition to the clinical observations and recommendations presented, selective scientific literature (e.g. empirical studies, theoretical based literature) relevant to these clinical issues were reviewed. This information was presented at a clinical workshop for a multidisciplinary group of pediatric oncology healthcare providers at the 2003 Pediatric Oncology Group of Ontario (POGO) Conference. First, information regarding certain challenges that adolescents and young adults with cancer often face regarding sexual health are discussed. Next, issues pertaining to self-esteem, as they relate to sexual health in adolescents and young adults with cancer, are summarized. Finally, clinical recommendations are offered and then applied to 2 case examples.

Sexual Health in Adolescents and Young Adults With Cancer

  1. Top of page
  2. Abstract
  3. Sexual Health in Adolescents and Young Adults With Cancer
  4. Self-Esteem and Adolescents and Young Adults With Cancer
  5. Self-Esteem and Sexual Health in Adolescents and Young Adults With Cancer
  6. Clinical Recommendations
  7. REFERENCES

What is ‘sexual health?’ According to the World Health Organization11 sexual health is a “state of physical, emotional, mental and social well-being related to sexuality…and it requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences.” As adolescents and young adults wade through the quagmire of sexual identity, the adolescent with cancer (compared with noncancer peers) may encounter additional obstacles during this journey: 1) accessing sexual-health knowledge, 2) difficulties in interpersonal relationships, and 3) potential body image concerns. Adolescents and young adults with cancer may have a relatively limited sexual knowledge, which may impair the development of a healthy sexual identity.12 Not only will some adolescents with cancer obtain relevant sexual information differently (e.g. because of reduced contact at school, and with peers in general), but may also be confronted with information regarding their sexual health that cognitively (e.g. due to developmental age or impairments due to cancer-related treatments) they are not prepared to face. These are 2 major factors that contribute to the challenge of acquiring adequate knowledge regarding sexual health for the adolescent with cancer.

The manner in which sexual knowledge is typically transmitted to adolescents gets interrupted when the adolescent has a major illness and spends large amount of time in a hospital setting and away from school.13 Most schools provide some sexual health education, and the pre-teen or teen may miss these few classes that are being offered because they have medical appointments or are hospitalized. Instead, the majority of such information regarding sexuality and sexual health may be delivered to the teen by parents, siblings, and possibly via information by the healthcare team rather than from peers and sexual education courses at school. Typically, as a child matures, parents adjust their supervisory practices to allow for more freedom and independent decision-making by the adolescent14; however, parents of adolescents with cancer tend to be overprotective of their children.15 On the basis of their experience of their child's illness, parents likewise may view their child as particularly vulnerable9 (and not able to cope with the information). Similarly, the teen might experience this overprotection not only from family members, but also from the healthcare team (and maybe even from classmates and teachers). This overprotection and message of vulnerability may discourage the adolescent's efforts toward individuation and from figuring out their own sexual identity.

Treatment context can play a role in adolescent information-seeking or receiving, and thus, affect how sexual information is transmitted to the adolescent with cancer. Much of what adolescents learn about sexuality is acquired tangentially, mostly through informal conversations and the media.16 Teens might overhear peers making oblique references to sex and might also learn about sex by listening-in on adult conversations. Music videos and television provide pieces of sexual content that may or may not be factual in nature. Teens with cancer may miss out on some of these opportunities, while being exposed to more of others. For example, they may hear healthcare staff discussing their marital problems in the middle of the night. The home- or hospital-bound adolescent may watch more television than they would have had they remained healthy. Overall, the context within which many teens with cancer learn about sexuality can differ markedly from their healthy peers.

Cognitively, some adolescents with cancer may be catapulted into a level of sexual knowledge for which they are unprepared or may have difficulty processing. Issues such as fertility preservation may be of little concern to a young teenager's realm of life interests,17 but may be of prime concern to that same person as a young adult.18 A 13 year-old who may not have started to masturbate may be confronted with making a decision about having his sperm frozen while also in the midst of dealing with a new cancer diagnosis. Information processing may be complicated by neuropsychological changes resulting from central nervous system treatment.19 Thus, the adolescent or young adult with cancer who has cognitive impairments due to treatment may experience challenges in understanding written material about sex and health or even information presented orally through discussion. Additionally, integration of information needed for critical decision-making (e.g. do I need contraception, should I freeze my sperm) can be challenging for those adolescents with cancer sustaining treatment-related cognitive deficits.

Interpersonal relationships play a critical role in the sexual health of adolescents. There are a number of barriers to the development of romantic relationships in teens and young adults with cancer, including feelings of being unattractive or different, possible impairments in social skills, and fears felt by potential partners regarding the diagnosis. Adolescents with cancer may be fearful about exposing their diagnosis or any physical imperfections (e.g. portacath) to others for whom they have romantic feelings. Peers may become accustomed to feeling sorry for the adolescent and might view him/her primarily as a sick person,20 perspectives unlikely to lead to a romantic or sexual relationship. The dilemma of how a teen with cancer views him/herself sexually may be compounded if the teen is also in the process of identifying himself/herself as gay or lesbian. Thoughts or concerns about sexual orientation may be stifled while attempting to cope with the multitude of other variables regarding their diagnosis. Teens with cancer may not be comfortable discussing or exploring their feelings regarding homosexuality with parents or peers since they may feel that they have already involved them in an inordinate amount of hardship regarding their cancer diagnosis alone.

Isolation from peers and treatment-related cognitive impairments can hinder the development of social skills required for the initiation of relationships.21 Some adolescents and young adults with cancer may not have learned how to flirt or how to approach someone about a date. Moreover, such young people may have difficulty in understanding the nuances of intimate conversations or what is humorous as opposed to what is offensive. This may even be more the case for those with treatment-related cognitive impairments. Any trouble with social pragmatics can lead to further problems in negotiating sexual relationships, including safe sexual practices. Fears felt by potential partners of adolescents and young adults with cancer may present some challenges in the initiation of romantic relationships. The myth that cancer is contagious is still prevalent22 and thus potential partners may see the cancer diagnosis as a reason for the avoidance of intimacy. In turn, potential partners may be reluctant to enter into a relationship with someone who might die.

A positive body image is an integral element of sexual health in adolescents and young adults.2 The somatic effects of medications, such as prednisone, can be devastating, causing weight gain, “chipmunk cheeks,” and acne.23 Reminders of treatment, such as stretch marks from the prednisone and scars from surgery, can be sources of embarrassment, shame, and feelings of being “different” from peers.24 Amputations of limbs or any obvious unevenness between the 2 sides of the body, particularly breasts, can have an effect on sexual self-image.25 Even after treatment, concerns regarding appearance may develop even though others might not perceive the teen as less attractive.8

Self-Esteem and Adolescents and Young Adults With Cancer

  1. Top of page
  2. Abstract
  3. Sexual Health in Adolescents and Young Adults With Cancer
  4. Self-Esteem and Adolescents and Young Adults With Cancer
  5. Self-Esteem and Sexual Health in Adolescents and Young Adults With Cancer
  6. Clinical Recommendations
  7. REFERENCES

The notion of self-esteem refers to the level or degree to which one values or likes oneself. The “self” evolves through a cognitive-developmental maturation process26 and continues to be influenced by an individual's direct and indirect experiences with his/her environment.27 In fact, the process of “liking oneself” takes place across the lifespan and is influenced by internal beliefs, emotions, and social experiences (including the perception of those experiences). Before adolescents can consider whether they like themselves, they have to discover who they are. Thus, identity formation (‘who am I?’) becomes one of the most significant developmental tasks during this age period.28 Adolescents typically undergo 4 hierarchical stages of identity formation29: 1) identity diffusion in which they test out various identities through trial and error (the experimental stage), 2) moratorium in which they enter an ‘identity crisis’ (“I can't figure out who I am.”), 3) foreclosure in which they adopt someone else's identity (“I am just like my best friend, Joe.”), and 4) identity achievement in which identity is achieved through a conscious decision-making process (“This is who I am because these are my beliefs and how I want to be.”). To arrive at this last stage of identity achievement, adolescents need to feel emotionally independent enough from their parents so that they base their chosen ‘self’ on a decision-making process that is uniquely their own. This is a process in which they need to reconcile the past ‘self’ of child hood and the imagined future ‘self’ of adulthood. They carry out this reconciliation through an interactive process with their social environment in order to achieve their present identity.28 Often, this process of developing self-esteem gets intermingled with the potential struggles in forming a ‘self’ identity (i.e. how much I like myself depends on knowing exactly who I am).30

Adolescents and young adults with cancer may face added burdens in the process of creating an identity and self-esteem. For example, those who have a disease (e.g. brain tumor) and central nervous system treatment-related cognitive impact may have difficulties figuring out self-identity through impaired processing speed (e.g. deciphering one's self-identity in relation to the environment or the meaning of various social interactions through a perceptual ‘sea of sludge.’). Other factors, such as appearance (e.g. alopecia), missed social opportunities because of clinic visits, treatments, or infections, as examples, and lost classroom time, further add to difficulties in developing a sense of self and feelings of liking oneself.

Literature in the area of self-esteem highlights important relationships between domain specific self-esteem (self-esteem related to a certain area of individual functioning) and global self-esteem (one's overall feeling of self-worth),31, 32 such that domain-specific self-esteem may factor into global self-esteem. In a study where adolescents in the 11th and 12th grades were administered the Harter Self-Perception Scale for Adolescents, the higher the self-perception in domain-specific areas, the higher the overall self-esteem.31 The most widely known relationship, coined the interactive hypothesis by James,33 suggests that global self-esteem is most affected by those domain-specific self-views one regards as important. In other words, an individual may struggle with a low global self-concept (e.g. I feel bad about myself) that may be related to feelings of low self-esteem in domain-specific areas that he/she places high importance on (e.g. I feel bad about myself because I know dating is important and I'm not good at it). Laschowiicz-Tabaczek34 found that young adults' importance ratings on domains of functioning acted as a mediator between domain-specific self-views and global self-esteem. Thus, for an adolescent or young adult with cancer, negative feelings about body image, for example, may translate to an overall feeling of lowered self-esteem.

Self-Esteem and Sexual Health in Adolescents and Young Adults With Cancer

  1. Top of page
  2. Abstract
  3. Sexual Health in Adolescents and Young Adults With Cancer
  4. Self-Esteem and Adolescents and Young Adults With Cancer
  5. Self-Esteem and Sexual Health in Adolescents and Young Adults With Cancer
  6. Clinical Recommendations
  7. REFERENCES

For adolescents, the ‘who am I’ question is very much linked with the physical self (body appearance, strength, endurance) and the sexual self (how attractive am I to others, especially to others to whom I am attracted). How the adolescent views his/her physical self typically impacts self-esteem (the feelings of liking oneself),35 this being especially true for the adolescent with cancer.36 Sexual self during adolescence emerges from physical experiences (e.g. development of secondary sex characteristics) and emotional experiences (e.g. first romantic relationships). For adolescents who are gay and lesbian, these challenges are even greater, since there are often fewer avenues for these adolescents to talk about their experiences, views of self, and opportunity to experiment. Added to these challenges in development of a ‘sexual self’ are the cumbersome layers imposed by a cancer diagnosis and treatment.

Barriers to acquiring sexual-health knowledge, developing interpersonal relationships and a positive body image, that were discussed earlier, may all interfere with the development of positive self-esteem; however there is some growing evidence that the occurrence of an illness in an individual's life may also contribute to their own sense of personal growth and competence. According to Erickson,28 adolescents who do not achieve a ‘secure-enough’ sense of personal identity and self-esteem are likely to have difficulty achieving other developmental tasks that build upon these earlier tasks. Conflicts in relation to these earlier tasks are also likely to resurface during various stages of treatment as well as after completion of treatment.37 Specifically, new scars from surgery will need to be incorporated into the adolescent's body image and sense of self. However, this task is made difficult if the adolescent is not quite sure who the ‘self’ is (i.e., he/she is still in the earlier identity diffused developmental status). The inability to integrate the scar into the adolescent's overall identity can then impact the development of a positive self-esteem (e.g. “My scar is ugly and I must be ugly….I am less worthy than other teens my age.”).

There is evidence that adolescent survivors of childhood cancer are more likely than age-matched healthy peers to be in the foreclosed identity status (i.e. identity is adopted from external sources, like a family member). This status may act as a protective factor in aiding survivors' adaptation to the stresses of the cancer experience.38 An adolescent undergoing cancer treatment may not have the time or energy to go through the self-reflection and experimentation process involved in decision-making about his/her ‘self’ required to achieve an independent sexual identity. Although the teen's self-esteem may ultimately suffer, it may be easier during cancer treatment for the adolescent to adopt the beliefs of his/her parents20, 38 regarding issues of sexual identity and activity. For example, an adolescent girl who might have romantic and sexual feelings may dampen or suppress those feelings and avoid intimacy and even flirting in deference to overprotective parents who fear their daughter's independent connection to another individual and may still think of their daughter as a younger child. Limited experiences to explore relationships outside the family can impair the development of positive self-image and self-esteem. Adolescents undergoing cancer treatment may defer to explicit or implicit parental beliefs because of the emotional and physical reliance on parents during this period and because of their own fears about the uncertainty of their future.

Although adolescents and young adults with cancer confront many issues regarding their sexual health that have the potential to compromise their self-esteem or limit their realm of experience when compared with that of their healthy peers, their unique set of experiences also creates opportunities for positive events that can enhance their self-esteem. The development of self-esteem is linked to a large range of comparisons within one's environment;39 therefore, diversification of life events allows the developing adolescent to have a more ‘well-rounded’ repertoire of experiences to shape his/her self-esteem. Adolescents and young adults with cancer are faced with additional and sometimes traumatic life experiences different from their healthy peers. Some individuals surviving traumatic events have been reported to feel an increased sense in well-being termed ‘posttraumatic growth’ (PTG).40 In a study conducted with pediatric oncology patients interviewed at least 2 years posttreatment, those who reported a perception of greater diagnostic severity as well as the presence of both cognitive and physical impairments resulting from the cancer experience were also more likely to report feelings of PTG (Unpublished data). The meaning and sense of ‘growth,’ or PTG, derived from the cancer experience can not only change the perceptions and appraisals of life experiences of youth faced with cancer, but provide a sense of surviving triumph from which a healthy self-esteem can grow.

Clinical Recommendations

  1. Top of page
  2. Abstract
  3. Sexual Health in Adolescents and Young Adults With Cancer
  4. Self-Esteem and Adolescents and Young Adults With Cancer
  5. Self-Esteem and Sexual Health in Adolescents and Young Adults With Cancer
  6. Clinical Recommendations
  7. REFERENCES

The following are clinical recommendations based primarily on the clinical experiences of the authors. Little empirical data exist that support specific interventions aimed at promoting sexual health and self-esteem in adolescents and young adults with cancer.

Personal control

Oncology teams can facilitate the development of positive self-esteem and the development of sexual health in their adolescent patients in several ways, which may include facilitating the adolescent and young adult's sense of personal control and individuation, offering opportunities for sexual health education, and bridging the adolescent or young adult's sense of competency with areas wherein he/she feels less certain. One helpful way for healthcare providers to facilitate positive self-esteem and sexual health in the adolescent or young adult with cancer is by providing a sense of personal control. This can be done by offering choices for the adolescent/young adult to allow him/her practice in independent decision-making and feelings of ownership about the decisions made.41 For example, the adolescent can be offered choices about the inclusion of family or significant others during medical discussions, treatments, or procedures, shared decision-making regarding treatment, and choices about sexual education.42 Choices, even in shared decision-making situations (e.g. entering a Phase I study following relapse or continued cancer growth or spread during treatment), can provide the adolescent with a sense of mastery over aspects of cancer and treatment that are controllable. To acknowledge the emerging adult status of adolescents, and especially for young adults, discussions about sexual health education and fertility options should be carried out in a confidential setting. The standard sexual health curriculum offered in schools should be offered to the young patient especially if the teen or young adult is hospital- or homebound.

Sharing stories

One way for these young patients to experience positive self-worth is to become a mentor to other younger patients or more newly diagnosed teens. Some adolescents or teens with cancer may benefit from being paired with a mentor or another teen with cancer who has a positive self-esteem and can model good coping skills. Alternatively, functioning as a mentor to other teens facing similar challenges can be growth-promoting and can enhance self-esteem. As the sociologist Arthur Frank43–46 describes, opportunities to share one's own story, often called the ‘personal narrative,’ can be extremely beneficial and can build upon the development of posttraumatic growth. Sharing one's story with others directly, in chat rooms, in written narrative, or in other ways can enhance feelings of self-worth.47, 48

Prevention

If central nervous system disease or treatment indicate the risk for cognitive impairment, then staff should ensure the implementation of neuropsychological testing so that the results can guide the type and level of education. Such preventive actions can reduce school and social-related frustration in teens with cognitive impairments, especially for those teens in whom the deficits may be subtle. Such cognitive-deficit based academic and social difficulties can further damage the development of a positive self-esteem if they are not addressed early. Another example of enhancing adolescent individuation and development of a positive sense of self includes proactively finding opportunities to praise the adolescent's or young adult's initiative, individual self-care behaviors, decision-making,49, 50 and teaching coping skills.

Learn history and understand current developmental status

Understanding the teen's or young adult's developmental, social, family, and past histories (e.g. developmental delays, academic and peer-related history, family issues, and history of other traumas) will inform the professional team about potential risks and factors to consider in facilitating the teen's development of positive self-esteem and sexual health. For example, in an adolescent with cancer, a past history of an eating disorder would provide important information for discussions about body image and treatment. For an adolescent with this premorbid history, personal control can be an even more salient issue manifesting itself in deleterious ways if not recognized and addressed early (e.g. compliance with taking oral medications). Discussions of personal issues, like body image related to alopecia or scarring, in the planning of treatment options might be more profitable when carried out jointly between parents and the adolescent for those teens who are still in the “external source of identity formation” stage (foreclosed identity status). However, involvement of parents in such discussions with teens who are emerging from that earlier identity formation stage can impair further development and rob the adolescent of opportunities for self-growth and experience in independent decision-making.

Bridge individual strengths

Bringing to light the advantages and importance of possessing the domain-specific strengths the adolescent or young adult does already have may prompt him/her to refocus the attention and importance on those qualities, leading to an increased global self-worth. For example, if a teen or young adult discloses that he/she lacks confidence in dating, staff can emphasize the importance of his/her other areas of competence, such as noting intellectual abilities or other friendships that have been made and kept. Such reminders may create the bridge between their competent skills and the necessary skills needed for dating, and enhance adolescent feelings of global self-esteem which may, ultimately, provide him/her with confidence in approaching potential dates. Discussing domain-specific coping skills and role-playing certain social scenarios can provide flirting and sexual discussion practice for young patients who may not have had the real life experiences at school as do their peers.

The 2 cases below are presented to exemplify the relationship between sexual health and self-esteem in adolescents and young adults with cancer and are utilized to demonstrate the clinical application of the recommendations listed earlier. The names used to identify the patients have been changed to protect their identities.

Case 1. Jane is a 15 year old female who was diagnosed with leukemia at age 12. She was a voracious reader before her treatment. Since her central nervous system radiation treatment, her cognitive processing abilities have decreased. She no longer reads for pleasure and hasn't read a novel in 3 years. She might have discovered information about sex while reading a steamy romance novel. Not only is she missing out on knowledge about sex, she is also lacking what she would have learned about flirting and how people can relate, all of which she may have integrated into the development of her sexual identity. As Jane finds it easier to process information that is presented verbally or with pictures, a team member could explain the basics of human sexuality using illustrations from sexual health texts. She can be shown condoms, birth control pills, and other methods of contraception. If Jane does not want to discuss this with a member of the team, someone can help her identify a resource person within her community or family.

Case 2. Daniel is a 20 year old male who was diagnosed with osteogenic sarcoma of his femur at age 12. He describes himself as a spiritual person with strong traditional Christian beliefs who ‘found God’ when he was diagnosed. He has had a limb salvage procedure with multiple revisions and has had surgery for lung metastases in addition to chemotherapy. His girlfriend is a major source of support. Daniel says that although he has huge scars and his future is uncertain, his girlfriend loves him and stands by him. Daniel states that his privacy and dignity are of great importance and he believes that it is not the role of healthcare staff to discuss personal issues such as sexuality unless initiated by the patient. He has definite beliefs regarding his personal boundaries, religion, and coping through spirituality and social support. He appears to be in the identity achievement status—Daniel knows who he is and what he wants from life, although, at times, he admits that the future seems uncertain. He copes with this uncertainty by living his life day by day. Daniel likes who he is and expresses his appreciation for being given the opportunity to share ‘his story’ with others either for the purpose of mentoring and inspiring other youth with similar challenges, or for educating others, including healthcare providers. He says that this gives him a sense of accomplishment because he is ‘giving-back’ for the life he was given.

In these examples, Jane and Daniel have faced various obstacles over the course of treatment during their adolescence and young adulthood. Their stories illustrate the types of issues relating to self-esteem and sexuality that young patients diagnosed with cancer grapple with during this critical period of identity formation. An important caveat to remember: once the adolescent legally becomes an “adult” (at varying ages in different jurisdictions) they must sign all hospital and treatment-related documents and give his/her own permission for healthcare providers to talk with the adolescent's parents or others. This is a legal transition from adolescence to adulthood for which compliance is critical. This ‘rite of medico-legal passage’ also provides important external evidence that the adolescent has achieved an important mile stone towards adulthood and can also help shape identity formation. By presenting the teen or young adult with opportunities for sexual health education modified to suite his/her individual comfort level and learning needs, healthcare professionals can facilitate the patient's development of a healthy sexual identity. Understanding, within a developmental context, the identity formation stage of the adolescent or young adult can better guide healthcare professionals in shaping treatment choices and making decisions about how sensitive issues such as sexuality or issues relating to self-esteem could be raised. Deferring to the patient as the expert of his/her own ‘story’ can be an empowering tool for a young patient who is not only confronting the developmental tasks of adolescence and young adulthood, but is also making the life-altering journey through cancer treatment.

REFERENCES

  1. Top of page
  2. Abstract
  3. Sexual Health in Adolescents and Young Adults With Cancer
  4. Self-Esteem and Adolescents and Young Adults With Cancer
  5. Self-Esteem and Sexual Health in Adolescents and Young Adults With Cancer
  6. Clinical Recommendations
  7. REFERENCES
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