Empowering our youth: initiating sexual health education on the inpatient unit for the chronically ill pediatric patient.
Key Words: Chronically ill, pre-teens, puberty, adolescents, sexual health, sexual education, physical disabilities, sexually transmitted disease, inpatient.
Sexual health is a vital component of education in the chronically ill pre-teen and adolescent population, yet it is largely ignored by healthcare providers as part of these patients' plans of care. In the years between pre-puberty and young adulthood, sexuality and sexual self-concept emerge and often dominate physical, emotional, and social development. Sexual education during inpatient hospitalization is usually nonexistent, with healthcare providers focusing on the more immediate physical diagnosis. In addition, providers have their own biases, fears, and misconceptions regarding sexual health in this population. Pre-teen and adolescent patients with genetic and congenital problems, the physically disabled, and immunocompromised patients, including oncology and transplant clients, often receive inadequate sexual health education. Adolescents account for 50% of the 20 million sexually transmitted infections that occur annually (Centers for Disease Control and Prevention [CDC], 2016). The high risk of physical, emotional, and social consequences related to adolescent sexuality and sexual encounters makes education on this topic even more essential.
Sexuality and sexual maturation are critical components in an adolescent's life. The transition to sexual maturity can be a difficult developmental shift, not only for young people themselves, but also for their parents and healthcare providers. Gender recognition begins as early as three years old, and sexuality development occurs soon there after (Karr, Choudhury, & Singh, 2015). Sexual development not only presents in visible physical changes, but profound psychological and hormonal changes that are influenced by culture and social factors (Karr et ah, 2015; Styne & Grumbach, 2016). Hormonal fluctuations are the primary influence for secondary sexual characteristics. In females, increased androgen production by the adrenal glands and increased estrogen production by the ovaries contribute to development of body and pubic hair, breasts, and the mature female body form. Menstruation is thought to be induced by a large increase in luteinizing hormone and other gonadotropic hormones. Males experience body and pubic hair growth, development of the mature male physical form, and gonadal enlargement due to increased testosterone and androgen hormones. Growth spurts in males and females are also significant in childhood and throughout the adolescent period, although rates of growth differ between sexes and individuals (Styne & Grumbach, 2016).
Children moving toward puberty and adolescence have innate brain-based changes created by rising and changing hormonal levels, suggesting that sexual drive and sexual self-image are directly controlled on a physiologic level. The brain continues to grow until 20 to 25 years of age. Although the brain's plasticity decreases with age, children begin to operate on a higher level of intelligence and decisionmaking as they enter adolescence and young adulthood (Styne & Grumbach, 2016). A child's social and cultural influences directly affect their sexual development. Peer influences on self-concept, sexual norms, attitudes toward sexual intercourse, and peer pressure can all impact sexual self-concept and sex normalization into adulthood (Karr et ah, 2015; Styne & Grumbach, 2016). Parental influences, cultural norms surrounding sexuality, and religious preferences can either aid in the healthy development of sexual constructs, or inhibit and confine a young person to a more immature sexual state (Styne & Grumbach, 2016).
Adolescents who have congenital disorders or disabilities, or who receive medication that affects their hormones and reproductive systems may experience physical and psychological sexual changes earlier or later than their counterparts. Avoiding discussion of sex education and how their disease state can affect physical and emotional development may cause embarrassment or confusion regarding emerging sexuality (Karr et al., 2015; Styne & Grumbach, 2016). Parents and healthcare providers are responsible for supporting both healthy and ill children in their sexual development.
Why Is Sexual Health Education Important for This Population?
Compromised Immunity And Health
The chronically ill adolescent may have compromised health, development, and immunity due to his or her illness(es) (Ashoor, Aviles, Pasternak, & Vehaskari, 2015; Woolverton & Ostroff, 2000). Sexually active pre-teen and adolescent patients may experience higher rates of sexually transmitted diseases (STDs) and human papilloma virus (HPV) due to immunosuppressant treatments. Chemotherapy, transplant antirejection medications, and steroid medications lower white blood cell and neutrophil counts, which inhibit immune system responses and predispose this population to infection and greater complications if STDs are present (Ashoor et al., 2015; Klosky et al., 2014). STD occurrence dramatically rises with increased number of sexual partners. Children with chronic illnesses may be more apt to having a greater number of partners to regain a sense of control and normalcy over their complicated lives (Klosky et al., 2014).
Susceptibility to Sexually Transmitted Diseases
Chronic transplant, oncology, and physically disabled adolescents may have increased involvement in unsafe sexual activity compared to their healthy peers (Ashoor et al., 2015; Ashoor & Dharnidharka 2015; Klosky et al., 2014; Woolverton & Ostroff, 2000). Improved libido after illness resolution and the need to seek out "normalcy" may prompt adolescents to engage in sexual activity earlier than their peers (Ashoor et al., 2015; Klosky et al., 2014). Many adolescents have a sense of invulnerability (partially due to their developmental stage), which may be tested by life-limiting illnesses (Ashoor et al., 2015). Pre-teens and adolescents can develop poor sexual self-concept, as well as feelings of physical and emotional vulnerability due to their sense of having a time-limited lifespan. These feelings may result in risky sexual behavior (Ashoor et al., 2015; Klosky et al., 2014). For example, adolescent kidney transplant recipients often have an intensified libido and engage in multiple, unsafe sexual encounters after transplant. They may feel a need to become equal with their already sexually experienced peers and want to regain a feeling of normalcy. Fewer hospitalizations and treatment needs provide opportunity for increased sexual encounters (Ashoor et al., 2015). These populations should have adequate sexual health education tailored to their specific diseases and disabilities as inpatients to increase their chances of being healthy as outpatients and potentially reduce re-admissions (Ashoor & Dharnidharka, 2015).
Medication Side Effects
Many medical treatments can have complications or side effects to sexual health, including decreased arousal and erections, vaginal dryness, infertility, and delayed puberty, which can affect a young person's experience and overall view of sex and their own sexuality (Murphy, 2005; Woolverton & Ostroff, 2000). Pediatric patients who receive chemotherapy and radiation treatments for cancer may experience late pubertal development and sexual dysfunction (Lindau et al., 2016). Pre-teens and adolescents may need to be provided family planning options, such as freezing sperm or eggs, prior to treatments that may damage their reproductive organs (Lindau et al., 2016; Murphy, 2005; Woolverton & Ostroff, 2000). Medications needed for illness management may additionally alter the effectiveness of oral or implant contraceptives in female patients, resulting in unplanned or ectopic pregnancies (Murphy, 2005). Sexually active adolescents with vaginal dryness may need guidance on how to decrease pain with sexual intercourse (Murphy, 2005; Woolverton & Ostroff, 2000). Poor experiences around sexual performance due to medication side effects may negatively impact a person's view of their own sexuality (Murphy, 2005). Education and administration of HPV vaccines can also be provided for these patients in the inpatient setting to decrease HPV risk before becoming sexually active.
Physical and Developmental Disabilities
Children and adolescents who have physical deformities and mobility issues may have difficulty engaging in sexual intercourse (Murphy, 2005). Spastic muscles and deformities can inhibit sexual pleasure and may contribute to emotionally damaging experiences. Mental and physical developmental delays can create embarrassment or shame related to these experiences (Murphy, 2005; Murphy et al., 2015). The lack of opportunity to be involved in intimate relationships and fear of the future often causes chronically ill adolescents to avoid normal sexual experiences (van Dijk et al., 2008). Physical, social, and mental losses related to their disease may increase the risk of chronically ill pediatric patients developing poor sexual self-concepts and diminished sexual identities (Barrera, Teall, Barr, Silva, & Greenberg, 2010; Cheng & Udry, 2002; Murphy, 2005; van Dijk et al., 2008; Woolverton & Ostroff, 2000). Visible representations of their disease, such as hair loss and scars, may cause self-consciousness, especially in a sexually intimate setting (Cheng & Udry, 2002; Murphy, 2005; Woolverton & Ostroff, 2000). Physical developmental delays and growth retardation due to treatments may enhance these feelings (Jacobs & Pucci, 2013).
Unsafe Sexual Activity
Chronically ill adolescents may engage in more sexual activity than their healthy counterparts (Ashoor et al., 2015; Ashoor & Dharnidharka, 2015; van Dijk et al., 2008). To maintain feelings of normalcy, chronically ill pediatric patients may act out by engaging in high-risk sexual behaviors or sex with multiple partners (Ashoor et al., 2015). Unsafe sexual practices can increase risks for secondary infections, pregnancy, sexual abuse, and poor views of sex (Ashoor et al., 2015; Ashoor & Dharnidharka, 2015; Murphy, 2005). Some chronic subpopulations, such as transplant patients, have experienced adverse medication interactions with oral contraceptives that may deter them from using birth control, placing them at a higher risk for unplanned pregnancy (Ashoor et al., 2015; Ashoor & Dharnidharka, 2015).
The issue of infertility as a result from treatments, frequent illness, and medications may cause both physical and emotional issues when chronically ill young people try to engage in intimate relationships (Ashoor et al., 2015; Ashoor & Dharnidharka, 2015; Barrera et al., 2010; Murphy, 2005). According to a study lay Murphy et al. (2015), 46% of male and 30% of female patients who underwent chemotherapy had fertility problems. With no provider education, they often incorrectly believe they are infertile because of their longstanding illnesses and treatments (Ashoor et al., 2015). Unplanned pregnancy for the chronically ill and frequently hospitalized female could compromise both her health and the unborn child's health, and may lead to poor pregnancy outcomes (Ashoor et al., 2015; Ashoor & Dharnidharka, 2015; Barrera et al., 2010). For females with disabilities, complications related to pregnancy and labor should be discussed in depth (Murphy et al., 2005).
Alteration in Sexual Identity
The chronically ill inpatient adolescent may have an alteration in their own identity. Their once healthy physical identity is often replaced with a "sick" identity (Ashoor et al., 2015; Murphy et al., 2015). Their changing body image and frequent hospitalizations may contribute to depression, poor body image, and low confidence (Barrera et al., 2010; Murphy et al, 2015; Woolverton & Ostroff, 2000). These patients may never feel attractive or feel sexual attraction for others due to their emotional separation from sexual experiences (Jacobs & Pucci, 2013; van Dijk et al., 2008).
Socially, chronically ill pediatric patients are known to experience poor assimilation into peer groups and may be uninterested or unaware of how to initiate intimate relationships (Barrera et al., 2010; Cheng et al., 2008; Klosky et al., 2014). They often have a fear of being rejected by their social groups and intimate partners (Evan, Kaufman, Cook, & Zeltzer, 2006; Murphy et al., 2015; van Dijk et al., 2008). They are unable to initiate a conversation about their diagnoses and discuss the potential implications related to sexual performance, physical attractiveness, or fertility because they lack understanding and education on the topic (Evan et al., 2006; Murphy et al., 2015).
Poor sexual self-concept and low self-esteem lead to increased vulnerability of sexual exploitation (Murphy et al., 2015). Disabled children are twice as likely as their well-bodied counterparts to be sexually abused (Murphy, 2005). Social group rejection feeds their need for social approval and may place them in a situation where they are coerced into engaging in sexual acts (Cheng & Udry, 2002).
Decreased Exposure to Sexual Health Education
Chronically ill adolescents tend to have a lack of both inpatient and outpatient education about sexual health. Many times, the specialty provider caring for the patient will address specific sexual needs at the time of initial diagnosis as related to the future disease process, including contraception and STD screening (Ashoor et al., 2015; Ashoor & Dharnidharka, 2015). These sexual issues are not usually followed up or addressed throughout the course of illness. Many patients have revealed feeling they were not given satisfactory information regarding sex (Ashoor et al., 2015; Murphy, 2005).
Chronically ill children's long hospital stays create missed opportunities on traditional school and socialization that naturally educate children about sex. They often miss out on the normal social discussions about sex and traditional sexual education classes due to hospitalizations (Evan et al., 2006). These children are often alone and may be not allowed or may be unable to engage with peers due to immunocompromised states and/or long hospitalizations (Barrera et al., 2010; Evan et al., 2006).
Barriers to Sexual Health Education
Providers, parents, and inpatient adolescents themselves seem to recognize the importance of discussing sexual health issues, especially in conjunction with life-altering diseases requiring hospitalization (Greydanus, Pratt, & Patel, 2012). Barriers to having these discussions are a result of many factors (see Table 1). Healthcare providers may fear that parents of these children would disapprove of discussions around sexual health, deeming them inappropriate due to their age or health status (Greydanus et al., 2012; Murphy, 2005). These adolescents have little privacy or time to engage in sexual behaviors alone or with partners due to frequent provider and parental presence (Greydanus et al., 2012).
Provider and Parental Biases
Providers and parents may occasionally be overprotective of these ill children and have a bias that they are not interested in sexual activity (Evan et al., 2006; Murphy, 2005; Neufeld, Klingbeil, Bryen, Silverman, & Thomas, 2002; Woolverton & Ostroff, 2000). Overprotecting these youths and sheltering them from open discussions pertaining to sex may hinder developmental maturity and cultivation of social behaviors and sexuality (Evan et al., 2006; Murphy, 2005). Some providers and parents may feel that children with physical disabilities are either non-sexual and naive or are overtly uncontrolled and inappropriate with their sexual urges (Greydanus et al., 2012; Murphy, 2005; Neufeld et al., 2002: Woolverton & Ostroff, 2000).
Focus of Hospitalization
During hospitalizations for chronic and severe illness, the major consideration is physical health, leaving little or no time for discussions with adolescent patients about normal intimate sexual relationships (Murphy et al., 2015). Clinicians will usually review sexual history at the initial diagnosis, such as with oncology patients (Murphy et al., 2015; van Dijk et al., 2008). Providers generally review only specific questions related to the disease state, and do not revisit this conversation throughout the hospitalization course or beyond (Murphy et al., 2015; van Dijk et al., 2008). Adolescents are complex beings who struggle with mental, emotional, social, and developmental issues when attempting to handle their sexuality concurrently with a chronic illness (Greydanus et al., 2012; Murphy et al., 2015; van Dijk et al., 2008). Young people with physical limitations are as sexually active as their well-bodied peers, and many want sexual relationships, children, and families. Many are often as sexually experienced as their friends (Cheng & Udry, 2002; Greydanus et al., 2012). They have questions regarding sex, and how their treatments and illnesses will affect future relationships.
Provider and Parental Discomfort
Neither parents nor providers may want to assume the responsibility for sexual education due to embarrassment or lack of training in discussing the topic. Parents can play an essential role in providing this education by creating a trusting and open line of communication, allowing the adolescent to feel comfortable asking for advice and information in a nonjudgmental atmosphere (Greydanus et al., 2012; Murphy, 2005). However, parents of chronically ill inpatient young people may be resistant to the idea, feeling their child's physical health should take precedence over sexual education. Parents may be emotionally uncomfortable approaching this topic and may find it difficult to view their child as a sexual being (Greydanus et al., 2012; Murphy, 2005). Negative past experiences with their own sexuality or certain religious or cultural views may prevent parents from discussing sexual topics. Sexual health education is often avoided due to anxiety that it will somehow encourage or spark sexual activity (Murphy, 2005).
Lack of Provider Sexual Health Education and Resources
Providers may believe that chronically ill children are not interested in sexual activity or expressing their sexuality. Reasons education is not provided may involve clinician discomfort with the topic, assumption that these adolescents are disinterested in the topic, and a primary focus on immediate health needs (Murphy et al., 2015). Providers generally do not receive education on communicating these sensitive topics and have a lack of knowledge regarding what topics to discuss with specific illness populations (Greydanus et al., 2012; Murphy, 2005; Murphy et al., 2015; Neufeld et al., 2002). Due to advancements in modern medicine, young people who once died as a result of these life-altering illnesses are now surviving into adulthood (Greydanus et al., 2012; Murphy, 2005). Sexual education conversations that were once unnecessary are becoming increasingly important as the child reaches puberty (Greydanus et al., 2012).
Mass Media and Peer Influence
Social media plays an important role in the lives of most adolescents, but especially with those who are hospitalized with a chronic condition. Social media outlets may be their only method of communicating with peers, receiving information, and grasping social norms (Brown et al., 2006; Doornwaard, Bickham, Rich, ter Bogt, & van den Eijnden, 2015). Internet and social media benefit hospitalized patients by providing peer communication and support, but may also lead to viewing over-sexualized imagery and incorrect information about sexuality and sexual health (Brown et al., 2006; Doornwaard et al., 2015; Evan et al., 2006; L'Engle, Brown, & Kenneavy, 2006). Media attitudes about sexuality are often grossly inaccurate, focusing on recreational, unprotected sex with multiple partners as acceptable and even desirable (Doornwaard et al., 2015; L'Engle et al., 2006; Lowe, Escoffery, Mertens, & Berg, 2015; Murphy et al., 2015). Children exposed to these images may be more apt to engage in sex acts at an earlier age (Brown et al., 2006). Because hospitalized youth often use even more social media and Internet than their healthy counterparts, they are at greater risk of being negatively influenced by poor examples of sexual behavior in the media (Doornwaard et al., 2015; Evan et al., 2006; L'Engle et al., 2006). When education is not provided to these patients, they often seek out information online to fuel their curiosity and gain knowledge about sexual standards, often reading false information (L'Engle et al., 2006; Murphy et al., 2015)
Hospitalized chronically ill adolescents often have limited social interaction due to frequent absences from school and their inability to see friends while they are hospitalized. Young people want to be socially accepted, and their friends' views on sex are often very persuasive on their sexual behavior (Brown et al., 2006). They are often unable to obtain information on sexual norms as their healthier peers do by experiencing their own trials and mistakes (Brown et al., 2006; Murphy, 2005).
Lack of Research And Guidelines
The lack of research and guidance on how to provide sex education for the inpatient and outpatient chronically ill child is a barrier to this education. Insufficient information and research leaves providers at a loss (Canada, Schover, & Li, 2007; Jacobs & Pucci, 2013; Murphy et al., 2015). Sexual health education among the inpatient chronically ill population most often focuses on a single conversation with broad topics, instead of patient-specific communication that goes into depth about relationships, sexual behaviors, risks, and sexual self-concept (Murphy et al., 2015). Most information regarding this education relates to the well child in a primary care setting. Information regarding sexual health needs in specific disease states is needed to provide adequate guidance and sexual health education to this pre-teen and adolescent population (Neufeld et al., 2002).
Implications for Practice
Sexual health education for chronically ill pre-teen and adolescent patients in the inpatient setting has been neglected for a variety of reasons. This deficit negatively impacts the physical, mental, social, and developmental health of these already disadvantaged young people. Recognition of the need to provide quality sexual health education is critical in the inpatient setting for this high-risk group that desperately needs guidance. Inpatient sexual health education is important for this population, but providers do not commonly have sufficient time to effectively provide education in this busy setting. Further ideas need to be explored regarding how to set aside time for this valuable inpatient teaching.
Sexual health education should be individualized and must be an ongoing conversation from the beginning of the illness throughout its trajectory in the inpatient setting and then beyond into the outpatient setting. Clinicians should make the conversation separate from their history. Advanced practiced nurses (APNs) are often specialists in having difficult and complex conversations with patients, and could be an asset to communicating openly with these clients. Obtaining an accurate and complete patient history is vital in providing information to the provider about potential sexual health issues, past complications, or the need for more focused education. When discussions around sex occur more frequently, conversations and questions surrounding this topic feel less awkward, and open discussions become the norm.
The clinician should first create a mutually trusting and open relationship with the patient before approaching these sensitive topics. Communication may be complicated further if the provider is unaware of the patient's physical and mental sexual self-concept, or if the patient does not feel comfortable speaking with an unknown provider. APNs and registered nurses are often the more visible and consistent team members to patients and their families, although other healthcare team members could also provide education depending on their personal knowledge, training, and comfort level. This conversation should be an open discussion to reduce tension around the subject. Providers may find it helpful to offer the patient a peer mentor to support the patient with social and emotional issues around their illness. These same-age peers are individuals who can provide guidance on sexual issues on a personal level with the patient.
Clinicians should offer to make sexual health education sessions private conversations. Many children do not feel comfortable discussing sexuality with their parents. The provider can play a role in offering advice and support with issues that children may find embarrassing. Clinicians should also offer confidentiality to the patient regarding specific details of conversations to maintain privacy.
Education for Providers
Clinicians need training on how to effectively provide sexual health education to chronically ill inpatient and outpatient adolescents. Increased education on role playing conversational scenarios, initiating play therapy, and offering creative suggestions for sexual arousal, stimulation, activity, and positions should be available. Providers and other healthcare professionals working with these populations need to be well versed in making age-appropriate and patient-specific suggestions regarding sexual activity.
Parents should be included in the discussion surrounding sexual health for their child, providing the patient agrees and the parent wants to be included. Level of involvement should be determined by their personal comfort surrounding the topic, their cultural and religious views, and their child's willingness to discuss these sensitive issues. State laws may vary on requirements about informing parents of certain decisions. APNs and bedside nurses can open the door to communication between parents and children, and guide parents in discussing sensitive issues. Optimally, parents should be an open and reliable resource for questions and guidance. Hospitals should create education programs to help parents with communication surrounding sexual issues
All chronically ill children should be viewed by the healthcare team and their families as multifaceted, sexual individuals with emotional desires similar to their well-bodied peers. Parents and clinicians must be aware of their own assumptions and personal biases before effective education about sexuality and sexual health can occur. Patients who receive sexual health education will be better able to form a healthy sexual identity, and may experience a greater sense of control and independence. Providers should recognize that each individual patient has different concerns, and treatment plans should be altered to help with self-concept surrounding physical appearance, treatments, fertility, symptom management, and energy preservation.
Partly because it is an uncomfortable topic for many parents and providers, sexual health education is often deemed a less important area of focus than other complex physical disease issues. All care providers must be increasingly aware of their own biases toward sexual health education and realize this may impact their patients' physical, psychological, and developmental health for years to come.
Research and Guideline Generation
With minimal sexual health education guidelines and research available, healthcare providers often have no experience or education in this area and are unable to deliver this specific knowledge effectively to their patient populations. Further research is needed in inpatient and outpatient settings to establish evidence-based guidelines for delivering sexual health education. These guidelines should be specific to populations of inpatient, chronically ill adolescents with consideration of further reinforcement in the outpatient setting. Improving and standardizing guidelines surrounding these topics will facilitate patient satisfaction during hospitalization and will provide valuable tools young people can use throughout their lives.
Instructions for Continuing Nursing Education Contact Hours
Empowering Our Youth: Initiating Sexual Health Education on the Inpatient Unit for the Chronically 111 Pediatric Patient
Deadline for Submission: December 31, 2018 UNJ 1606
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This article was reviewed and formatted for contact hour credit by Rosemarie Marmion, MSN, RN-BC, NE-BC, SUNA Education Director.
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Ashley Bakke, MSN, FIN, is a Registered Nurse, The Hospital of the University of Pennsylvania, Philadelphia, PA.
Table 1. Indications and Barriers for Sexual Health Education in the Inpatient Pediatric Population Indications Barriers Compromised health and immunity Provider and parental bias High susceptibility to STDs Provider and parental discomfort Poor medication and treatment Primary focus on physical disease side effects Inadequate provider education Physical and developmental Lack of guidelines and research disabilities Infertility Mass media influence (social Increased incidence of unsafe media/TV/Internet) sexual activity Poor sexual identity Lack of sexual health education
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