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Meeting the Reproductive Needs of Female Adolescents With Neurodevelopmental Disabilities Katherine Ferrell Fouquier and Barbara D. Camune

Correspondence Katherine Ferrell Fouquier, RN, CNM, PhD, University of Mississippi Medical Center, School of Nursing, 2500 North State Street, Jackson, MS 39216. [email protected]

ABSTRACT The complexity of caring for female adolescents with neurodisabilities often overshadows normal biological changes. These young women may require additional or individualized support as they adapt to normal puberty and sexual maturation. Many choices are available to assist in managing menstrual problems, hygiene issues, and contraception. Special considerations regarding contraceptive methods, sexual education, and improving service accessibility are explored for clinicians.

JOGNN, 44, 553-563; 2015. DOI: 10.1111/1552-6909.12657

Keywords adolescent menstruation developmental disability contraception intellectual disability sexuality

Katherine Ferrell Fouquier, PhD, RN, CNM, is an assistant professor in the School of Nursing, University of Mississippi Medical Center, Jackson, MS. Barbara D. Camune, DrPH, CNM, WHNP-BC, FACNM, is a clinical professor and the Graduate Program Director in the Louise Herrington School of Nursing, Baylor University, Dallas, TX.

The authors report no conflict of interest or relevant financial relationships.

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Accepted October 2014

A

dolescence is a critical period of development during which choices made can have long-term implications for the health and wellbeing of the individual and for society as a whole. As adolescents begin to take on the more mature roles of adults, a key factor in the development of a healthy life perspective that will prepare them for healthy adulthood is the ability to interact with the people and places in their communities (Tylee, Haller, Graham, Churchill, & Sanci, 2007). Emerging from adolescence to young adulthood can be stressful. As adolescents move to greater independence, they may be presented with new threats in the form of alcohol, drugs, violence, and sexual maturation. This transition into the adult role is compounded in adolescents with disabilities.

had specific learning disorders. No single term for disability exists; instead, definitions are contextual and can mean a physiologic condition that requires a medical intervention or an impairment or limitation that requires a social intervention, such as income support (Brault, 2012). Intellectual disability is a term used when a person’s ability to learn at an expected level and capacity to function in daily life are limited (Centers for Disease Control and Prevention [CDC], 2014). Both of these definitions encompass neurodisabilities, which are most often described as delay and/or inability to sit, walk, crawl, speak clearly, form conversation, remember, follow social rules, and understand consequences of actions and solve problems (CDC, 2014).

Worldwide, it is estimated that 220 million adolescents have disabilities, and approximately 80% of youth with disabilities live in developed countries (United Nations [UN], 2014). In the United States, the National Center for Education Statistics (NCES; 2014) reported that in the 2011 to 2012 school year, 6.4 million or 13% of all students in the public school system age 3 to 21 received special education services, and of these students, 36%

In this article, we focus on optimal reproductive health interventions and education opportunities for office and clinic nurses, nurse practitioners, midwives, and other health care providers who care for female adolescents with disabilities defined as mild to moderate neurodevelopmental disabilities, movement limitations associated with neurodevelopmental disabilities, and/or seizure disorders.

 C 2015 AWHONN, the Association of Women’s Health, Obstetric and Neonatal Nurses

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Often female adolescents with disabilities are assumed to be asexual, and this conjecture can be an obstacle in providing education and support.

Puberty and Emerging Sexuality The early, middle, and late stages of adolescence are critical periods of development characterized by the complex phenomenon of puberty and emerging sexuality. Typically for women in the United States, the onset of puberty begins between ages 8.5 and 13 years and continues to evolve for approximately 4.5 years beginning with early breast development (thelarche), growth of pubic and axillary hair (pubarche), followed by first menses (menarche) (Greydanus & Omar, 2008). Although few researchers have focused on age of menarche among adolescents who are developmentally disabled, it appears no significant differences occur in timing of puberty and emerging sexuality compared with adolescents of normal intellectual functioning (Burke, Kalpakjan, & Smith, 2010). However, for reasons not fully understood, some adolescent females with neurodevelopmental disabilities have an increased incidence of early pubertal changes or of precocious puberty (Murphy & Elias, 2006) that can present additional challenges during the maturation process. For this reason, providing age appropriate reproductive health education should be introduced when the adolescent is cognitively capable. Hopefully, early education will alleviate any fear or anxiety the adolescent might experience with the onset of puberty. Movement from the nurtured role of a child into a more mature adult role is a stressful transition that is compounded by the shroud of secrecy and shame that surrounds human sexuality, particularly in the United States. Developing into a sexual being can be challenging to adolescents with disabilities and to their parents or caregivers. Sexual development is a complex and multidimensional process during which emotions are tightly woven within biologic and physical changes, gendered role expectations, and individual attitudes, beliefs, and values (Greydanus & Omar, 2008). Adolescents with disabilities may not know how to respond to these unfamiliar changes, and for some, this period may be a time of increased vulnerability when even inadvertent activity and experimentation may be met with catastrophic results such as rape or unintended pregnancy. Often, caregivers assume that female adolescents with

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disabilities are asexual, and this conjecture can be an obstacle for parents/caregivers and health care providers in providing education and support during this tumultuous developmental period.

Intellectual and Adaptive Disabilities Intellectual disability, also referred to as cognitive disability or mental retardation, refers to limitations in mental capacity and adaptive behaviors seen at an early age that compromise intellectual functioning and the development of the social, conceptual, and practical skills needed for everyday functioning (Siddiqi, Dyke, Donohoue, & McBrien, 1999). Various disorders, such as Down syndrome, cerebral palsy, and autism are associated with intellectual disabilities and may range from mild intellectual disability (intelligence quotient between 50 and 75) to moderate-profound intellectual disabilities (intelligence quotient between 25 and 50) that require significant support and care from families or providers within institutions (American Association on Intellectual and Developmental Disabilities [AAIDD], 2014). Of the estimated six million children in the United States age 6 to 21 years who are classified as intellectually disabled, approximately 80% fall into the mild disability category (AAIDD, 2014). As they mature, many of these individuals express interest in marriage and sexual intimacy. As they progress through the same stages of psychological development as their peers with normal intelligence quotients, adolescents with mild disabilities have the added burden of developing healthy self-identities as functional sexual beings within the contexts of their disabilities (Greydanus & Omar, 2008). Common misconceptions (sexual misconceptions that arise from the medical model that focuses on impairment and misconceptions stemming from the social model that emphasizes cultural and sexual norms) make the psychosocial adaptation to the adult role all the more difficult (Greydanus & Omar, 2008; Murphy & Elias, 2006). These misconceptions permeate the media and literature and promote biases that may hinder communication between health care providers and parents/caregivers (Parchomiuk, 2013; Rembis, 2010).

Movement Limitations and Immobility Providing reproductive health care to adolescents with spinal cord injuries (SCIs) requires special

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attention to factors such as movement limitations, paralysis, spasticity, and contractures that can also be seen as effects of congenital anomalies such as spina bifida and meningomyelocele. Spasticity, muscle weakness or paralysis, and contractures are the most commonly manifested signs seen in patients with cerebral palsy, a group of disorders with varied involvement of the brain and nervous system that affects limb movement and intellectual and cogitative abilities (Kirby et al., 2011). A Pap smear and pelvic examination are no longer required prior to age 21 for contraception initiation and use (Kaplan, 2006; U.S. Preventive Services Task Force, 2012). However, if a pelvic examination is warranted, adolescents with these mobility problems may be hindered by the inability to independently move to an examination table, safely position in stirrups, open their legs, or comfortably remain on a conventional examination table (Camune, 2013). Pelvic examination for vaginal discharge, abnormal bleeding, chronic pain, or other gynecologic problems will require extended appointment time and additional assistance for positioning in a safe, nonthreatening environment. Additionally, clinicians who do perform pelvic examinations with adolescents with SCIs need to be aware that individuals injured above the T6 level are at risk for developing autonomic dysreflexia (AD), an abnormal autonomic system response that can cause a rapid and potentially life threatening rise in blood pressure (Greydanus & Omar, 2008; National Spinal Cord Injury Association, 2014). Any irritating stimulus below the level of the SCI, such as stool in the rectum, a full bladder, or a cold speculum can activate AD. Initial warning signs such as facial flushing, diaphoresis, throbbing headache, nausea, and decreased heart rate may occur (Greydanus & Omar, 2008). Frequent verbal and visual assessment during the exam along with preventive measures such as using warmed metal speculums and lubrication, assessing for empty bowel and bladder before speculum insertion, and maintaining a semiFowlers position will help to avoid AD (Bates, Carroll, & Potter, 2011; Camune, 2013). Removal of the irritant (speculum or fingers) and sitting the adolescent up will usually terminate AD (Camune, 2013). Although nearly 20% of traumatic injury to the spine occurs in women between ages 15 and 35 (one woman for every four men), limited knowledge is available on the physiologic and psychologic effects in women, particularly in

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adolescents (McCluer, 1992). Adolescents who sustain a traumatic SCI will most likely not experience a permanent disruption in menstruation or fertility but may have temporary amenorrhea that lasts as long as 5 months with absence of ovulation during that time (Schopp, Sanford, Hagglund, Gay, & Coates, 2002). Adolescents may experience decreased sexual desire related to alterations in their body image, loss of self-esteem, the inability to find a comfortable position for intercourse secondary to spasticity, contractures, or hypersensitivity to touch. They may also experience an inability to reach or feel orgasm, or they may have a different perception of orgasm (Kaplan, 2006; Sipski-Alexander & Alexander, 2007). Sexual education is extremely important in the rehabilitative phase after SCI for the adolescent and for the family/caregiver.

Seizure Disorder Unlike other neurodevelopmental disabilities, girls with epilepsy have an unpredictable chronic condition that may become more unstable with the hormonal changes of puberty. Seizure patterns may fluctuate at menarche, and in some adolescents an exacerbation of seizures prior to or with the onset of the menstrual cycle may occur (Morrell, 2006). It is important to obtain a detailed history of seizure activity along with a review of medications, because seizures and high levels of an antiepileptic drug (AED) may affect cognition and emotional responses that could be confused with the unpredictable behaviors associated with puberty. As with all adolescents, education about reproductive health needs to begin early in adolescence and when possible include the caregiver (Greydanus & Omar, 2008). Combined oral contraceptives (COC) are appropriate for women with epilepsy; however, interactions with the AEDs need to be considered, and the dosage of estrogen will need to be increased to 50 ug (CDC, 2010; Morrell, 2006). For adolescents unable to take COCs, other contraceptive methods, such as condoms, intrauterine devices, or implants should be considered. All adolescents should be advised to use condoms for the prevention of acquiring sexual transmitted infections. Because folic acid uptake is limited with use of AEDs, adolescents using short-acting contraceptives need to take a supplement of 1 to 4 mg per day to protect against neural tube defect in the case of unexpected pregnancy (CDC, 1992).

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It is challenging for clinicians to individualize the plan of care and provide comprehensive information that meets the specific needs of the adolescent with neurodisabilities.

Contraceptive Information and Disclosure Information regarding sexual behavior, menstruation, contraception, and pregnancy needs to be discussed openly with female adolescents with disabilities and their parents, caregivers, and/or partners to teach and reinforce skills necessary for healthy psychosexual development (McCarthy, 2011). When contraception is requested, the clinician needs to evaluate who is requesting contraception and for what reason. Parents or caregivers may request contraception to help manage menstrual hygiene or based on fear of sexual abuse and/or pregnancy without fully understanding the normal biological urges occurring in the adolescent with disabilities (Servais et al., 2002). Full disclosure of the risks and benefits of contraceptive options is required. When the request for contraception comes from the female adolescent, additional consideration should be given to her capability to decide to enter into an intimate relationship (American College of Obstetricians and Gynecologists [ACOG], 2014).

Depo-Medroxyprogesterone Acetate (DMPA)

Over the past 50 years, improvement in combined hormonal contraceptive pill formulations and the development of alternate delivery methods, such as the patch and ring, have given women more options for family planning, managing cyclic bleeding episodes, and managing menstrualrelated problems such as dysmenorrhea (Kirkham et al., 2013). Combined oral contraceptives (COCs) can be taken cyclically or continuously, and both options need to be discussed. Although

Progestin-only injectable contraception provides effective birth control, is a private and convenient method of contraception, and is an important option for women unable to use estrogen (Bartz & Goldberg, 2011). Although little research has been done on contraception use among women with disabilities, two research teams (Paransky & Zurawin, 2003; Watson, Lentz, & Cain, 2006) found that depo-medroxyprogesterone acetate (DMPA) was the most frequently used form of birth control in women with intellectual disabilities. Watson et al. (2006) found that women with intellectual disabilities were more likely to start DMPA shortly after menarche and continue using it for extended periods of time, which contributed to the risks of short-term loss of bone mineral density (BMD) and long-term risk of fracture. A 5% to 7% loss of bone density in the hip and spine have been seen with long term use of DMPA, though it is unclear how this finding may affect risk for osteoporosis and fracture later in life (Haider & Darney, 2007; Harel, Wolter, & Gold, 2010; Harel, Wolter, Gold, & Cromer, 2010). In 2004, the U.S. Food and Drug Administration (FDA) issued a black box warning on the effects of DMPA on BMD loss and cautioned that continued use of DMPA beyond 2 years should be considered only if other contraceptive methods are inadequate (ACOG, 2014). Current recommendations indicate that DMPA is safe if individualized for women with disabilities and potential drug interactions are accounted for (ACOG, 2014; CDC, 2010). Nurses should provide education on the potential effects of DMPA balanced with known negative health and social

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Individualizing the plan of care and providing information that is comprehensive and meets the individual needs of the adolescent and her caregivers can be challenging for clinicians. A variety of options are available that provide contraceptive and noncontraceptive benefits (Table 1). In adolescents with disabilities, multiple physical and psychosocial considerations need to be addressed, and in most cases the decisionmaking process needs to include the adolescent herself, her caregiver, clinician, rehabilitation specialist, and social worker (Servais et al., 2002).

Combined Hormonal Contraceptive

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short-acting contraceptives are the most common methods selected by adolescents, McCarthy (2011) interviewed general practitioners about prescribing COCs to women with intellectual disabilities and found that clinicians were less likely to prescribe COCs because of user error and variability in following the method. Management considerations for adolescents with disabilities are (a) difficulties with swallowing a pill or maintaining a daily dosing schedule, (b) immobility that may increase risk of venous thromboembolism (VTE), (c) medications taken concurrently that may interfere with contraceptive efficacy, (d) pill packaging that may be difficult to manipulate, (e) contraceptive ring insertion, (f) contraceptive patch placement in areas prone to skin breakdown, and (g) hygiene issues with spotting and during menses.

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consequences associated with unintended pregnancy, particularly among adolescents (ACOG, 2014). Flexibility of initiation during the menstrual cycle, potential for amenorrhea, efficacy in obese

women, and lack of estrogen make this choice an attractive contraceptive option, particularly with parents and caregivers. Adverse side effects need to be addressed for use in adolescents with disabilities and may include (a) bleeding irregularities; (b) reversible depression (Kaunitz, 1998;

Table 1: Contraceptive Options for Women and Adolescents With Disabilities Contraceptive Method

Benefits

Risks

Side Effects

Combined oral

Pregnancy prevention

Venous thromboembolism

Breast tenderness,

contraceptives (COC),

Rapidly reversible

Evra patch, and

Manage menstrual related

NuvaRing

problems Ovarian/endometrial cancer risk reduction Improvement in acne & hirsutism

(VTE) Myocardial infraction (MI)

nausea, vertigo, headaches, breast

increased when combined

tenderness,

with increasing age,

chloasma/melasma

smoking, and uncontrolled hypertension Earlier development of breast cancer in young women Risk of infection with sexual activity

Depo-

Pregnancy prevention

Pathologic weight gain

medroxyprogesterone

Reduces risk of seizures

Depression

weight gain, headaches,

acetate (DMPA)

May protect against

Allergic reaction

delay in return to fertility,

Bone loss

adverse effects on lipids

ovarian/endometrial cancer No association with increased risk of fragility fractures

Bleeding irregularities,

Risk of infection with sexual activity

Efficacy not affected by body mass index (BMI) No estrogen Absence of menstrual bleeding Improvement of menstrual symptoms Long-acting reversible contraception (LARC) Examples: Levonorgestrel intrauterine system (LNG-IUS) 20 mcg levonorgestrel/day (Mirena) LNG-IUS 13.5 mcg levonorgestrel/day (Skyla) Copper T intrauterine device (IUD) 60 mcg etonogestrel/day (Nexplanon)

99% effective, safe for adolescents, cost effective

Risk of infection with sexual activity with LARC

LNG-IUS decrease menstrual

Expulsion (slightly increased

blood loss and provide

with LNG-IUS 13.5 mg)

progestin for hormone

Infection on insertion

replacement therapy

Uterine perforation

Most effective way to provide emergency contraception

Expulsion Infection on insertion

Menstrual disturbances, breast tenderness, headache, mood changes, acne Menstrual cramping, spotting, increased bleeding Changes in menstrual

Lactation not disturbed

Uterine perforation

bleeding pattern,

Decrease menstrual blood

Insertion and removal

headache, vaginitis,

loss

complications

weight increase, acne,

Increased risk of

breast pain, abdominal

thromboembolic events

pain, and pharyngitis

May elevate low-density lipoprotein (LDL) levels

(Continued)

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Table 1: Continued Contraceptive Method

Benefits

Risks

Emergency contraception

Substantially reduces risk of

No medical contraindications

Examples:

unintended pregnancy after

for either method except

Copper IUD

an episode of unprotected

pregnancy or risk of

Ulipristal acetate 30 mg

intercourse

Sexually transmitted

(Ella)

Infection

Levonorgestrel 1500

Enzyme-inducing antiepileptic

mcg (Plan B One-Step

medications may reduce

or Next Choice) Endometrial ablation

Side Effects

the efficacy of ulipristal, Amenorrhea, hypomenorrhea, dysmenorrhea improvements

Surgical or anesthesia risks May become pregnant with increased risk of abnormal placentation, spontaneous abortion, and preterm labor Uterine perforation Risk of infection with sexual activity

Sterilization Examples: Tubal ligation,

Contraception

Surgical or anesthesia risks

Absolute amenorrhea with

Risk of infection with sexual

hysterectomy

Postoperative complications

activity

hysteroscopic tubal occlusion, hysterectomy Barrier methods

Spermicides, sponge, and

Examples:

condoms can be

Spermicides (over the

purchased OTC, are easily

counter [OTC]),

carried in pocket or purse,

sponge (OTC),

contain no hormones, and

condoms (OTC),

can be used while

diaphragm

breastfeeding

(prescription), cervical cap (prescription)

Spermicides carry increased risk of HIV from infected partner Spermicides and sponge do not protect against sexually transmitted infection Allergic reaction to latex Increased risk of toxic shock with sponge and diaphragm Increased risk of urinary tract infection with sponge and diaphragm

Note. From Hatcher, R. A., Trussell, J., Nelson, A. L., Cates, W., & Kowal, D. (Eds.). (2011). Contraceptive technology (20th ed.). New York, NY: Ardent Media. Adapted with permission.

McCann & Porter, 1994); (c) need for passive and active range of motion exercises (ACOG, 2014); (d) increase fracture risk with concurrent, chronic corticosteroid use (Haider & Darney, 2007); and (e) migraines with aura (Kaunitz, 1998).

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The use of DMPA has been shown to decrease menstrual disturbances, including ovu-

lation pain, dysmenorrhea, mood changes, headaches, breast tenderness, and nausea (Kaunitz, 1998; McCann & Porter, 1994) and may also help young women with some chronic illnesses. For instance, DMPA can decrease the frequency of grand mal seizures, possibly due to the sedative effects of progestin (ACOG, 2009; Bartz & Goldberg, 2011, Logsdon-Pokorny, 2000). Also minimal drug interactions occur between DMPA

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and antibiotics or enzyme-inducing drugs such as many anticonvulsants, mood stabilizers, and medications for migraine prophylaxis (Bartz & Goldberg, 2011; CDC, 2010). The only drug that decreases the effectiveness of DMPA is aminoglutethimide, which is indicated for suppression of adrenal function in selected cases of Cushing’s disease (Bartz & Goldberg, 2011). Ageappropriate supplemental Vitamin D and calcium may limit bone density loss while using DMPA (ACOG, 2014; Harel et al., 2010).

Long-Acting Reversible Contraceptives Long-acting reversible contraceptives (LARCs) comprising the copper intrauterine device (IUD), the IUD with progestin, and the subdermal hormonal implants have been approved for use in the general population, including nulliparous females and adolescents (ACOG, 2012; Medstad et al., 2011). Researchers have demonstrated the safety and efficacy of LARC methods of contraception, particularly in adolescent females, but these methods are underused in this population: approximately 4.5% use IUDs and 0.5% use implants (ACOG, 2012; Dodson, Gray, & Burke, 2012; Peipert et al., 2011; Winner et al., 2012). Factors thought to contribute to underuse are misconceptions and lack of knowledge among providers and patients (Fleming, Sokoloff, & Raine, 2010). Although IUD insertion may be easier during menses, if reasonable assurance exists that the woman is not pregnant, insertion can occur at any time during the menstrual cycle (Dean & Schwarz, 2011). The inability to relax and open legs wide enough for stabilization of the cervix and visualization of the os may prohibit some women with disabilities from utilizing these methods unless they are willing to undergo anesthesia for placement (Vadivelu, Harkness, Richman, & Shelley, 2004). Bleeding irregularities can be managed with nonsteroidal anti-inflammatory drugs (NSAIDs) (ACOG, 2012). The following are considerations for IUD use: (a) bleeding irregularities may be unpredictable and continue; (b) decreased sensation may obscure rare occurrences of uterine perforation, pelvic infection, or ectopic pregnancy; (c) expulsion may go unnoticed; and (d) need for monthly check of cervical strings may be prohibitive.

concerns about the potential for sexual abuse are present. Helping parents understand that emergency contraceptive pills (ECPs) taken within 72 to 120 hours of unprotected intercourse impair the ovulatory process and luteal function but do not cause abortions may alleviate any reluctance to consider ECPs as a viable option (Oringanje et al., 2009; Trussell & Schwartz, 2011). Currently, in the United States, three dedicated ECPs are available, Uliprital, Plan B One-Step, and Next Choice. Ulipristal acetate 30 mg (Ella) is a single-dose antiprogestin pill, approved by the FDA in 2010. Ulipristal acetate can be taken within 120 hours of unprotected intercourse and is the most effective EPC in postponing imminent ovulation (Trussell & Schwartz, 2011). Its effectiveness is not diminished in women who are obese. Ulipristal acetate requires a prescription, while the other two levonorgestrel options, Plan B One-Step and Next Choice, are available over-the-counter for women age 17 years or older. There are no contradictions for the use of ECP in adolescents younger than age 17; however, women who use ECP may experience intermenstrual bleeding or temporary nausea and vomiting (Oringanje et al., 2009). Additionally, certain combinations of enzyme-inducing AED medications may reduce the efficacy of Ulipristal; therefore, the insertion of an intrauterine device to prevent implantation maybe a preferable option for emergency contraception in women with seizure disorders (Faculty of Sexual and Reproductive Healthcare, 2010).

Contraceptive Surgical Interventions In cases where all other interventions have been unsuccessful or are contraindicated, surgical intervention may be considered. Options available are endometrial ablation, bilateral tubal ligation, tubal blockage (Essure), and when indicated, hysterectomy. Each of these methods requires a referral to a board-certified obstetrician/gynecologist. The legal and ethical issues of surgical interventions are beyond the scope of this article, however, as clinicians, we need to be able to counsel parents who may want to explore this option. Considerations about informed consent, caregiver anxiety and burden, and ability for self-care need to be included in any decisions (ACOG, 2007).

Emergency Contraceptives Parents of adolescents with learning and/or physical disabilities need to be educated about emergency contraceptive methods, particularly if

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Barriers to Care Adolescents with intellectual disabilities face a myriad of challenges and barriers to sexual

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Long-acting reversible contraceptives are available to preserve the autonomy of the adolescent while limiting fertility.

actualization as they progress through the transition from childhood to adulthood. Despite evidence to the contrary, myths persist regarding the asexuality or hypersexuality of adolescents with limited cognitive ability that result in negative connotations regarding a normal human drive and process (Brodwin & Frederick, 2010; Gomez, 2012). Female adolescents in particular encounter service barriers related to contraception, preconception counseling, and pregnancy care because of the disapproval of family members and service providers and social limitations such as poverty, lack of communication skills, low education levels, and limited access to broad peer interaction (Block, 2000; Gomez, 2012). Health care providers have given misinformation and restricted sexual education in an effort to dissuade sexual activity among females with cognitive and physical disabilities, including those with autism (Hamilton, 2009; Koller, 2000). Although families and heath care providers may postulate that the adolescent will be dysfunctional sexually and therefore protection from worldly individuals is warranted, many adolescents view this intrusion as control and restriction of autonomy (Bernert, 2011). Barriers also arise within health care systems. Lack of reimbursement for special needs equipment, additional time needed to teach and examine the adolescent with a disability, lack of knowledge about neurodevelopmental disability, and prejudice may limit access to quality reproductive health services (Kaplan, 2006; Shah, Norlin, Logsdon, & Samson-Fang, 2005; Wilkinson & Cerreto, 2008).

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Challenges to Fulfillment of Sexuality Although the biological urges of adolescents with disabilities are similar to those without disabilities, many adolescents with disabilities take medications to control physical symptoms, such as AEDs, antidepressants, and antispasmodics, that can alter their desire for intimacy, arousal, and orgasm and cause anxiety about physical enjoyment (Morrell, 2006; Sipski-Alexander & Alexander, 2007). Parents and health care team members who care for adolescents with neurodevelopmental disabilities need to address sexual emotions, relationships, safe sex and pregnancy prevention practices, contraception, and ways to experience intimacy and love without vaginal intercourse (Sipski-Alexander & Alexander, 2007). Discussion about appropriate venues for selfgratification, fantasy, foreplay, and interpersonal touching can assist the family and adolescent to minimize conflict. Adjustment to changes in body image and societal emphasis on physical beauty can compound insecurity about forming physical relationships in adolescents with disabilities. This adjustment may result in suboptimal selection in sexual exploration (Hamilton, 2009).

Clinical Implications

At times, the parent or caregiver of the adolescent may be the major challenge to addressing sexuality concerns of the adolescent with a disability (Wilkenfeld & Ballan, 2011). Parents may deny the maturation of the child, fear education, and lack the knowledge to discuss sexual issues; these factors present obstacles to the nurse educator/provider. Some parents are extremely protective and want to wait until the adolescent is an adult to discuss sexuality (Wilkenfeld & Ballan, 2011). An interprofessional team approach has been an effective method to allay the anxiety of parents (Wieland, Green, Ellingsen, & Baker, 2014; Wilkenfeld & Ballan, 2011).

Discussing female sexuality is difficult and too often goes unaddressed, particularly when caring for adolescents with or without disabilities. In adolescents with disabilities, exploring their sexuality and developing intimate relationships is a normal part of their sexual maturation but is often complicated by social and psychosocial barriers (Boyd et al., 2008; Patel, Greydanus, Calles, & Pratt, 2010). As office or clinic nurses, nurse-midwives, or nurse practitioners, it is our responsibility to provide evidence-based reproductive health education to our adolescent patients and their families. Ideally, discussions about physical development and sexuality need to begin prior to puberty, but given that families may relocate or their insurance coverage may change, that counseling may not be feasible. Paramount to caring for this population is establishing a therapeutic relationship with the adolescent and her primary caregiver that is based on respect, early education, and confidentiality. Nurses are in an ideal position to initiate this relationship through taking the time to listen, being patient with slow or incomplete responses to questions or requests, and by acknowledging the emotions of the adolescent and his or her caregiver related to pubertal changes. Use of open body language, smiling, and acceptance of the sexual nature of the visit can

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positively influence the ability of the adolescent to ask questions. A matter of fact approach to assisting the adolescent into a comfortable examination position and reassurance throughout the procedure can provide an opportunity afterwards for discussion about improper touching, rape, and sexual predators. These adolescents are especially vulnerable to sexual abuse and submissive roles in relationships (Wilkenfeld & Ballan, 2011). Additionally, nurses can introduce the use of pictures and cartoon videos to explain anatomy. Dolls with anatomical parts and models of contraceptive methods need to be available for sensory input. Opportunities to play and interact with these teaching aides without judgment are paramount when exploring the adolescent’s feelings about sexuality and knowledge of physical intimacy (Patel et al., 2010). Parents of children with autism expressed the need for resources to educate about sexuality to reinforce what is heard in the clinic or office (Ballan, 2012). In the past, DMPA was the treatment option of choice (Kirkham et al., 2013) for the management of reproductive health needs for those with neurodevelopmental disabilities, but with a variety of options now available, particularly LARCs, the advantages and disadvantages for each method need to be discussed and informed consent obtained whenever possible. Regardless of the contraceptive method chosen, when possible, education about condom use needs to be introduced for protection from sexually transmitted infections. An individualized management plan for reproductive health must be developed in the context of the adolescent’s ability to (a) manage menstrual irregularities, endocrine dysfunction, and fertility; (b) control swallowing, maintain manual dexterity, overcome visual impairment, and manage hyperactivity, spasticity, and contractures; (c) plan ahead; (d) adjust steroid use and avoid AED interactions; (e) maintain bone integrity through exercise, diet, and supplementations; (f) control weight gain that may affect mobility; and (g) understand safe sex and recognize inappropriate sexual behavior.

appointment times; (g) encouraging a personal support person to remain during examination; (h) using tactile and visual education; and (i) keeping open team communication about contraceptive methods and sexual concerns. Nurses need to be informed about the effective methods for teaching adolescents with disabilities. Moreover, providing a safe environment for physical examination, patient transfer, discussion of sexuality, and practice with contraceptive methods requires the nurse to be prepared. Simulation can provide an avenue for practice and evaluation of these skills through workplace initiatives and in basic nursing education programs. As more disabled adolescents become sexually active, the demand for nurses to become involved will expand.

Conclusion Providing information on human sexuality to adolescents with or without disabilities is uncharted territory for many clinicians yet is vital for the adolescent’s transition to a healthy adult role. Female adolescents with disabilities present complex reproductive health challenges that appear to be modifiable with ongoing education and comprehensive gynecologic services (Chan & John, 2012; Shah et al., 2005). Early education about the physical and psychosocial changes associated with puberty, menstruation and menstrual hygiene, budding sexuality, and sexual health is critical in helping female adolescents with disabilities and their caregivers successfully navigate the tumultuous adolescent years. As clinicians, increasing our knowledge of the strengths and limitations of young women with disabilities prepares us to meet the unique needs of this population.

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