Journal of Genetic Counseling, Vol. 5, No. 4, 1996
Genetic Counseling for Pregnant Adolescents 1 ~ s h a Peters-Brown 1,3 and Lorraine Fry-Mehltretter 2
The genetic counseling literature has a paucity of information on how to provide genetic counseling services to adolescents, especially those who are pregnant. The adolescent population should be viewed as a separate culture, complete with their own beliefs and viewpoints, which are dependent upon the developmental growth tasks of puberty. The completion of these tasks is complicated by pregnancy, which has its own set of developmental goals. The adolescent struggle with developmental goals interferes with the ability to identify consequences, predict future outcomes, and communicate self-revealing statements or decisions effectively. Instead, the adolescent has an egocentric frame of reference and seeks peer approval. The genetic counseling dilemmas presented by pregnant adolescents are illustrated through two case reports. A model based on our own expenence and a literature review for successful counseling of adolescents is presented, and utilizes the foundation of trust, patience, and nonjudgrnental behavior. Techniques that address the adolescent's concern for autonomy and peer approval are important, and can be achieved through nonthreatenin~ open-ended questions that promote self-expression. Incorporation of these techniques in genetic counseling and in graduate training will enhance genetic counseling services to the adolescent population. KEY WORDS: genetic counseling; adolescents; pregnancy.
INTRODUCTION
Recently, efforts have been made to improve genetic counseling services for different cultural groups through the cross cultural education and 1Laboratory Corporation of America, Research Triangle Park, North Carolina 27709-0000. ZDuke University Medical Center, Department of Obstetrics and Gynecology,Durham, North Carolina. 3Correspondence should be directed to Trisha Peters-Brown, Laboratory Corporation of America, 1912 Alexander Dr., Research Triangle Park, North Carolina 27709-0000. 155 I059-7700/96/t200-0155509.50/i © 1996 National Societyof Genetic Counselors,Inc.
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training of counselors. The adolescent population (ages 11-19) has been overlooked in this effort. The adolescent "culture" encompasses beliefs, rituals, and behaviors that are often not understood by adults, and present special challenges for genetic counselors, particularly in the prenatal setting. While there has been much debate about whether or not to provide genetic testing for those under 18, (Sharpe 1993; Quaid, 1993; Wertz et al., 1994) a subject that will not be addressed here, little information exists on how best to perform genetic counseling for adolescents. We present here the basic elements needed to provide genetic counseling for pregnant adolescents; a review of the psychological development of adolescents, a review of the developmental tasks of pregnancy, a synopsis of the "typical" pregnant teenager, and potential problems encountered in genetic counseling of this population. Two case reports will be presented to illustrate these points, followed by the discussion of specific counseling techniques successful with the adolescent population.
ADOLESCENT DEVELOPMENTAL GROWTH TASKS
Adolescent genetic counseling and informational needs are governed by the developmental tasks of puberty. According to several researchers (Block et al., 1981; Bluestein and Starling, 1994; Ponton, 1993; Mills, 1985; Trad, 1993a), the developmental tasks of adolescence are: • adaptation to physical changes • separation from family and establishment of meaningful peer relationships • individuation (establishment of personal values and beliefs) • identity formation • development of confidence and self-esteem • acquisition of understanding and control of impulses • ability for abstract reasoning • selection of future goals Identity formation includes the concept of sexual identity. Exploration of sexuality is an important aspect of developing peer relationships, and it has been suggested that to react to someone sexually may be necessary for completion of a developmental task (Block et al., 1981). This "reaction" does not need to include sex, but sex surveys and the adolescent pregnancy rate (Block et al., 1981; Trad 1993a; van der Pligt and Richard, 1994) suggest that many adolescents are engaging in intercourse.
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PREGNANCY GROWTH TASKS
Pregnancy is a time of transition with its own set of developmental tasks. Several authors have described the developmental tasks of pregnancy as (Block et al., 1981; Tunis and Gotbus, 1991): • • • • • •
acceptance of the pregnancy emotional incorporation of fetus (narcissistic love) reconsideration of self and role adaptation to physical changes development of maternal/fetal relationship development of a separate identity for the fetus (around the time of quickening) • envisioning a future relationship with infant as a separate individual
Many of these tasks are similar to adolescence, such as identity formation, physical adaptation, and individuation. Pregnancy is also a time of great emotional change; for some it is a positive, fulfilling experience, but for many people stress, anxiety, and depression are common feelings.
THE PREGNANT ADOLESCENT Adolescent peer relationships are supportive of sexual acting out, and society also provides a "supportive" environment for teen sexuality through suggestive advertising and popular literature (Block et al., 1981). As a result, many teenagers from all races, cultures, and socioeconomic stratas become pregnant. Not all, however, stay pregnant. There is unequal access to first trimester abortions, and the adolescent that remains pregnant is more likely to have a poor family support system, poor societal support, have lower academic achievement and be from a lower socioeconomic status (Block et al., 1981; Santelli and Beilenson, 1992). Like many adult pregnancies, teen pregnancies are often unplanned, but some adolescent pregnancies are planned. An adolescent may view pregnancy as the only adult role available due to "unpromising" career or educational opportunities, some seek parenthood to combat loneliness or to maintain closer ties to the baby's father, and some use pregnancy as a means to develop a separate relationship from their family (Block et al, 1981; Bluestein and Starling, 1994; Trad, 1993a). The pregnant adolescent is likely to delay seeking prenatal care, perhaps due to inability to recognize the symptoms of pregnancy, denial of the pregnancy, or lack of support to seek medical care. She may be facing the difficult decisions of abortion and adoption (Bluestein and Starling, 1994).
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The pregnant adolescent may not have completed many of her adolescent growth tasks, as described by several authors (Block et al., 1981; Bluestein and Starling, 1994; Ponton, 1993; Trad, 1993a). Her peer support that was present for sexual acting out may be withdrawn when the pregnancy is known, and the development of peer relationships will be more difficult. Control of impulses, abstract reasoning, and determining future consequences are commonly underdeveloped abilities for a pregnant teenager. She will be struggling with adolescent and pregnancy developmental tasks simultaneously. While the tasks overlap to some degree, there are conflicts between them as well. One pregnancy task is to "reconsider self," and many pregnant adolescents may not yet have completed the developmental task of identity formation. Part of identify formation is separation of self from the family, and this may be complicated by the conflicting pregnancy tasks of first incorporating the fetus as part of self, then later recognizing the fetus as a separate person. The physical adaptation skills may not be easy to achieve; the pregnant adolescent has been adapting to menstruation, hormonal changes, and breast development, trying to feel comfortable in a "new" body. When pregnant, she must deal with a lack of menstruation, different and faster breast development, nausea, the feelings of quickening, and weight gain. This can be a problem in a society where the expectation is to be like the popular super-models, extremely thin and "sexy."
GENETIC COUNSELING DILEMMAS FOR THE
P ~ G N A N T ADOLESCENT Consider that a young woman like the one described above has been identified as being at increased risk for a baby with a birth defect, and has been sent for genetic counseling. In addition to all of the other things she is currently coping with, the genetic counselor is likely to provide her with detailed information about a potential concern for the baby, then ask her to share her thoughts and possibly make a decision about a prenatal test. Adolescents have difficult verbalizing their thoughts, and are prone to self concealment. They have difficulty with decision making. For an adult, the decision-making process involves five steps (Trad, 1993a). • • • • •
identification of options understanding the possible consequences of each option identification of the desirability of consequences assessment of chance a consequence will occur combination of steps according to a personal decision rule
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Adolescents have difficult}, with decision making and other aspects of genetic counseling, such as discussing scenarios and exploring psychosocial issues, because they (Bluestein and Starling, 1994; Ponton, 1993; Mills, 1985; Trad, 1993a, b; Uzark, 1992): • often lack full knowledge about options • may not have the ability to understand complex information, such as amniocentesis or DNA testing, even if presented in simple components • cannot identify consequences due to lack of experience and their egocentric framework • cannot anticipate the chance of a consequence, as they do not possess the ability to predict future outcomes • cannot communicate their decision as effectively, and are preoccupied with assertion of independence • are predisposed to self-concealment and suppress disclosure due to being self-conscious • may be verbally restrained for lack of vocabulary and difficulty in thought organization • are overly concerned with peer approval and social expectations. While these points can apply to all adolescents, those ages 14-17 are least likely to self-disclose (Mills, 1985), are less sure of themselves (Ponton, 1993), and are more likely to be preoccupied with assertion of independence, which can lead to a defensive attitude toward health care providers (Bluestein and Starling, 1994). Adolescents of all ages are often reluctant patients as well. The reluctant patient is defined as one who, if given a choice, would avoid having contact with a health care provider (Vriend and Dyer, 1973). Reluctant counseling patients have been identified in many settings, from school to marriage counseling, and common themes in behavior occur in ever3," setting. Many adolescents do not seek genetic counseling, but are coerced into the situation by circumstances. Some "reluctant" behaviors include: • silence, or minimal, nonverbal communication, such as shrugging. • hostility, overt or covert. The "all-knowing" patient and those in denial fall into this category. Comments such as "I don't need to be here," or "You don't know what you're doing. I know I'm only three months pregnant, not five" despite ultrasound or other findings, are common. • overt compliance. This person views genetic counseling as a hoop to jump through, and essentially "fakes" their way through the process, saying what they think the genetic counselor wants to hear.
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• diversionary tactics. This patient takes care to hide his or her concerns, and redirects the session toward nonthreatening, often insignificant avenues.
CASE REPORTS
With this background, we describe here two case reports that illustrate the potential problems of providing genetic counseling to adolescents, followed by a discussion of techniques that may be useful in counseling this population. Case 1
N.E is a 16-year-old, G2P0 Caucasian female. Her first pregnancy was electively terminated 2 years ago because the patient felt she was too young and not ready, "like she is now." She was referred for genetic counseling by a local health department due to an elevated maternal serum alpha-fetoprotein (MSAFP) of 3.3 MoM, giving her a risk of 1/46 for having a baby with a neural tube defect. At the time of the genetic counseling session, N.E had not yet had an ultrasound. N.E was accompanied to the session by her 17-year-old sister, who had an 18-month-old son at home. Both girls lived with their father and younger brother. The patient's mother was described as an alcoholic who rarely came to visit. An older sister had married and moved away. The family medical history was significant in that N.F. described her younger brother as aggressive, hyperactive, with learning disabilities, a "lazy eye," and a heart defect. She and her sister have performed poorly in school, attended it sporadically, and felt perhaps they were also "mentally retarded." Further evaluation by a medical geneticist and Fragile X testing were offered, and initially accepted. N.E could not, or would not, provide the first name of the father of her child or describe him or his family history other than to say he was Hispanic, responding "I don't know" to questions about him, yet she indicated that he was the same father of her first pregnancy. N.E and her sister were unable to give their own family history beyond their own parents; they could not recall any specifics about aunts, uncles, or cousins. When asked questions regarding the family history, such as how many siblings their parents had, they simply shrugged. N.E was counseled about the nature and implications of her MSAFP result by the attending obstetrician immediately prior to the genetic counseling session, but she and her sister were unable to discuss any of the information provided, and shrugged in response to questions. Further at-
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tempts were made to explain the MSAFP results and the availability of ultrasound and amniocentesis by the genetic counselor in a variety of ways. This included encouraging the patient and her sister to discuss their perceptions and feelings of the MSAFP results, the amniocentesis, and risks to the pregnancy, but neither N.F. or her sister expressed any interest in doing so. They continually interrupted the session and redirected the conversation by asking if the watch the counselor was wearing was from Taco Bell, why she looked different than her identification badge, how many people worked at the medical center, etc. N.F. and her sister seemed to avoid potentially emotionally distressing topics, such as possible fetal anomalies, and attempts were made to directly address their possible concerns by asking questions like, "Does this scare you?" An effort to build trust was made by trying to discuss related but seemingly neutral topics, such as "did you wait long to check in today?" No answers were obtained. The session eroded completely when the counselor's pager went off; both N.F. and her sister thought the pager was "the coolest thing," and wanted to know all the specifics about the pager and the pager system at the medical center. From that point onward, it seemed that N.E and her sister no longer viewed the counselor as a medical professional, but rather as a "cool" peer who could afford a beeper. After the genetic counseling session, an ultrasound was performed. N.E accepted the offer of the ultrasound only because she wanted a picture of the baby. She did not ask about the presence or absence of fetal anomalies. She declined amniocentesis, citing fear of the needle as her reason. After the ultrasound procedure, she also declined further evaluation by a medical geneticist and fragile X testing. This session was frustrating to the genetic counselor because of the difficulty on the part of the counselor to assess the patient's knowledge, to deal with psychosociat issues presented by the patient, and to effectively control the session. Case 2
S.B. is an 18-year-old Caucasian female with moderate to severe cystic fibrosis (CF). She has been followed in the pediatric pulmonary clinic for her CF for a number of years and has kept her appointments fairly regularly. She requested pre-conceptional counseling with a Maternal-Fetal Medicine specialist to discuss the implications of CF on future pregnancies. At that time she was informed that many pregnancies of mothers with CF have been reported, most with successful outcomes for both mother and infant. However, as pulmonary and pancreatic function can dramatically
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affect the patient's prognosis, she was strongly urged to contact her pulmonologist prior to pregnancy to review these issues in greater detail. S.B. conceived without meeting with her putmonologist and sought genetic counseling very early in her pregnancy. She arrived at her first session with the father of her pregnancy, her 17-year-old boyfriend. She had recently graduated from high school, was living with her mother, and hoped to move in with her boyfriend in the near future. S.B. also stressed that they had been trying to get pregnant for some time and knew that this "was the right thing to do despite what my pulmonologist and everyone else thinks." She gave us permission to discuss her care with her pulmonology caregivers, other than a social worker whom she felt had not consistently supported her decisions and would be disappointed in her. S.B. also felt that her mother, despite their close relationship, did not understand her desire to have a child. The genetic counseling session covered an evaluation of multiple medications, vitamin/mineral supplements and enzyme preparations, family history, CF carrier risk of S.B.'s boyfriend, CF risk to the fetus, DNA testing, and potential prenatal diagnosis. S.B. knew a fair amount about her disease, but had little knowledge about DNA testing, and its potential implications. A variety of scenarios were presented depending on carrier testing results. The couple hoped that the fetus' CF risk was low, but did not appear to be concerned with the possibility of a 50% risk and did not anticipate wanting prenatal diagnosis in this situation. They did opt for DNA testing which revealed that S.B. is a delta F508 homozygote, while her partner was negative for 32 mutations. His carrier status therefore, decreased to less than 1 in 100, with the risk of an affected fetus calculated to be less than 1 in 200. A follow-up counseling session was scheduled but postponed multiple times by the patient. Therefore the results of testing were given by telephone and in writing. S.B. continued to be seen in our Maternal-Fetal Medicine Clinic until she requested to transfer her care to a city closer to her home, as plans to move in with her boyfriend did not come to fruition. We attempted to obtain follow-up at the time of her delivery; however, her telephone was disconnected with no forwarding number.
TECHNIQUES FOR COUNSELING ADOLESCENTS
As these cases illustrate, many communication barriers and resulting frustration can exist when providing genetic counseling to adolescents. Open communication is essential for good genetic counseling. Successful techniques for counseling adolescents have been reported in the literature
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for other disciplines (Bluestein and Starling, 1994; Mills, 1985; Ponton, 1993a, Trad, 1993a, b; Uzark, 1992; Vreind and Dyer, 1973; Varekamp et al., 1993; van der Pligt and Richard, 1994). We have found that many can easily be incorporated into genetic counseling. The following is a suggested model for genetic counseling of adolescents based on our review of the literature and personal experience: • Build trust through guaranteed confidentiality. This requires you to know the laws of your state regarding the "emancipated minor." In some states, even with a pregnant patient, you may be required to reveal aspects of the genetic counseling session to the parents or legal guardians. By contracting with the adolescent's family in advance, when possible, about the issue of confidentiality, the adolescent patient can be given honest information up front about his/her confidentiahty. It is also important to know the precedent set for the particular center in which you work. Even though the state law allows a pregnant teenager autonomy in making decisions about her pregnancy, a particular facility may still require consent of the adolescent's legal guardian for a procedure like an amniocentesis or another genetic test. • Have patience. Understand that the average adolescent may be preoccupied with self-assertion and peer approval. The signs of this may be subtle; a teen may appear to listen to you carefully but choose the opposite of what he/she thinks you may want him/her to do. Be wary of the older, more mature adolescents. In many situations, they have the capacity to act as an adult, but may revert to earlier developmental stages in a perceived crisis. • Be nonjudgmental. The benefits of this approach are seen in case 2. S.B.'s social worker had advised her against pregnancy and attempted to steer her toward other goals. As a result, she refused all contact with her social worker when she became pregnant, and reluctantly allowed contact only with health care providers necessary to her care. Likewise, her mother, a potentially strong support person, was alienated by S.B. although she reported they had a close relationship. The genetic counselor approached the case in a nonjudgmental manner, offering support of the pregnancy. As a result, S.B. looked to her as an ally, even calling for assistance with nongenetic counseling related issues, such as scheduling routine appointments. • Explore family and social environment using nonthreatening questions. A good example of these questions are based on Smilkstein's Family APGAR, a questionnaire designed to assess family functioning (from Bluestein and Starling, 1994):
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• • • • •
Do you enjoy being with your family? Can you turn to your family when something is bothering you? Can you talk to your family? Does your family get upset when you try something new? Does your family get upset when you express strong feelings?
We have found these questions and other closed-ended questions can be used to build trust and communication since the patient can answer simply yes or no, or even nod. This type of questioning seems to work especially well with the minimal communicator, the adolescent who shrugs or is silent. Once communication is established, open-ended questions can then be used to further explore any psychosocial issues presented by the patient. Do not say, "I know how you feel." • Use visual aids to help define risks. Most genetic counselors use visual aids to help describe chromosomes, patterns of inheritance, or prenatal diagnostic procedures, but do not use aids in helping define risks. Use of a untitled bar graph, labeled from 1 to 10, can be used for a variety of purposes. For example, one genetic counselor suecessfully uses this technique to discuss possible pain from the amniocentesis. She asks the person considering the procedure how much they think the amniocentesis will hurt, with 1 being the least pain and 10 being the most. She can then give the patient a "visual idea" of the pain, since most women in her clinic describe the amniocentesis postprocedure as a "three" (Farmer, 1995). The untitled bar graph could be used for other aspects of genetic counseling for adolescents as well. The bar graph could allow an easy way for the patient to describe his/her feelings, without the risk of too much selfrevelation or having to verbalize complex emotional thoughts. For example, one could ask, "On a scale of 1 to 10, how worried are you about the baby?" or "On a scale of 1 to 10, the chance your baby has a problem is." This technique has value in that it provides another avenue for communication. In using this technique and others, though, it is important to remember that adolescents do not perceive themselves as vulnerable. They have the attitude of "it won't happen to me" (van der Plight and Richard, 1994). • Use therapy techniques designed to obtain self-revealing and selfreferenced statements. The use of the usual self-revealing techniques used in genetic counseling, such as probing and reflecting (Kessler, 1979), are often ineffective with adolescents because they require self-retrospection, an underdeveloped ability for most teens. One technique described in the literature involves the use of a written model, such as a vignette of an adolescent in similar circumstances.
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This has been described to be a stimulant of self expression for some nongenetic counseling therapies. The patient is asked to read a written model and is then asked to discuss the same topic. As peer approval is very important, the written model should include "thought provoking statements from peers." While we have not yet had the opportunity to incorporate and research peer statements in our counseling literature, we have found that providing written materials, such as a simple description of the MSAFP test or amniocentesis, has been very helpful. It allows the adolescent time to review the information at her own pace, share the information with family and peers, and seems to help with thought organization and self-expression. Written materials may not be effective will all adolescents, though. Like any patient seen by a genetic counselor, the adolescent may not be at the educational level necessary to read or interpret the literature provided. A second technique uses open-ended questions that utilize the patients' concern for peer approval and avoid direct self-revealment, such as: • • * •
What would you tell your best friend to do in this situation? Do you think your best friend would be scared? Are you like your best friend? How are you different?
A third option is use of the "anticipated regret model." This technique uses discussion of potential regrets and worries for possible outcomes prior to any consequence of a decision. Consequences of particular decision need to be presented to the adolescent, and then ask of him/her easy to answer questions, such as "Would you feel bad if this happened?" Adolescents have a difficult time answering questions such as "How do you feel about this?" It is helpful to alter the time perspective by describing a future event in detail, then asking specific questions about the "anticipated regrets" before and after the event. The anticipated regret model is similar to the structured scenario technique already employed in genetic counseling (Arnold and Winsor, 1984), but requires the counselor to break the scenarios and potential outcomes down into smaller components for discussion. This technique works best when effective communication and trust has already been established. e If possible, create a long-term plan, through short-term steps, with the patient. Adolescents have difficulty with the concept of future outcome, and for this reason cannot communicate long-term predictions or consequences. The review of each aspect of the decision-
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making tree in detailed, small increments with structured scenarios and use of anticipated regret will help the adolescent make a personal, informed choice. This has worked well and is especially important for the adolescent who requires long term follow-up, such as a high risk patient, or one with identified fetal anomalies. For example, A.B. is a 17 year old seen recently in our clinic. She presented late for prenatal care because she had an elevated maternal serum alpha-fetoprotein and an intrauterine fetal demise in a prior pregnancy and was afraid of facing the same issues. Ultrasounds at 18 weeks and 23 weeks after an elevated MSAFP revealed that her baby was growth retarded. She was subsequently diagnosed with lupus. When future appointments at our facility were discussed, she did not wish to return for "more bad news," and hoped to deliver in the community hospital close to home. Her physician did not wish to follow her further because of the lupus, and her local hospital did not have a tertiary care nursery or the support needed for her baby at birth. The purpose for receiving care and delivering at our center was discussed at length with A.B. and the anticipated regret model was used to explore potential "consequences" of not keeping the appointments. A.B. became very motivated on behalf of her baby after this discussion, and while she was not able to keep all the appointments, she tried very hard and would call in advance to cancel and reschedule. A few weeks later, it was necessary to admit A.B. to the hospital, and her baby was delivered at 28 weeks. Had A.B. not kept her appointments, the physicians may have missed the window of opportunity to intervene on behalf of A.B.'s health and that of her baby. Be versatile! Adolescents can surprise you. For reasons not obvious to the counselor, an adolescent who is communicating well may suddenly stop talking, or the teen who only shrugs her shoulders may begin to discuss psychosocial concerns. You may have to switch techniques midsession.
DISCUSSION
In reviewing the two cases presented, it is possible to identify areas in which the use of the above mentioned techniques would have been beneficial. In Case 1, communication was poor, and it was difficult to know what the patient understood from her conversation with the doctor and the genetic counseling session. She communicated almost entirely nonverbally, by shrugging her shoulders, or redirecting the conversation to more neutral
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areas, typical of the reluctant patient. Use of closed-ended questions designed to learn more about a patient's family and beliefs as described previously may have increased interaction about psychosocial issues, and subsequently increased trust. This may have allowed for transition into the techniques designed for self-revealment. A written vignette or the use of the described open-ended questions, as well as special visual aids, may have allowed the patient to express herself more easily. These techniques were utilized in a counseling session by the same counselor in a similar situation a few weeks later. The latter session was very similar; a 15 year old girl was referred for genetic counseling due to an abnormal MSAFP and she attended the session with her 20 year old cousin. Traditional genetic counseling was not successful, and communication problems arose. The techniques described above for exploring family issues were employed with satisfactory results. The adolescent in the case was more able to talk about sensitive issues, including her pregnancy and the abnormal MSAFE However, techniques utilizing peer approval strategies were not successful with this patient. When asked what she thought her best friend would do in this situation, the adolescent stated, "I don't know, she's never been pregnant." It became clear from her answer to this and other questions that her peer approval group had been altered to differentiate between pregnant and nonpregnant friends, and this patient had no pregnant friends. This may be a limitation of using peer approval based techniques in the prenatal adolescent population. The patient with cystic fibrosis in Case 2 sought genetic counseling, and therefore the counselor did not have to overcome the communication barriers presented by a reluctant patient. However, this patient did not understand the potential consequences of her decision to get pregnant. On the surface, S.B. appeared to be a responsible young adult who had planned her pregnancy knowing what difficulties might lay ahead though she had no specific plans for supporting her child, looking for work, moving in with her boyfriend, or providing care for herself and her child should she become ill. When asked about some of these issues it became evident that the boyfriend would actually have limited involvement raising their child and that the couple assumed S.B.'s mother would "help out." S.B.'s main reason for getting pregnant was to accomplish something significant before her death, as she did not believe she had enough time to complete college or embark on a career. As previously discussed, pregnancy is commonly sought in some adolescents who are ill or feel that their education and career opportunities are unpromising. While the genetic counselor did have an opportunity to interact with S.B. very early in her pregnancy, and provide DNA testing and results, it may have been more effective to create a long-term plan using the antici-
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pated regret model and written vignettes. The genetic counselor also felt that a referral for additional psychosocial counseling was appropriate, but this was declined by S.B. as she felt she did not want to be "lectured to." Genetic counseling is a new profession, still developing in its processes and techniques. While much debate exists on what types of services to make available to adolescents, such as carrier screening, it is clear that some services must be offered, such as prenatal testing. Genetic counselors need to be prepared to provide effective counseling to this important population. Methods for adolescent counseling must be researched and incorporated into graduate training. In this way, counseling services can be tailored to the adolescent "culture" and developmental level, improving the adolescents' abilities to understand and appreciate the issues they face.
REFERENCES Arnold J, Winsor J (1984) The use of structured scenarios in genetic counseling. Clin Genet 84:485-490. Block A, et al. (1981) Teenage pregnancy. Adv Pediat 28:75-98 Bluestein D, Starling ME (1994) Helping pregnant teenagers. West J Med 161:140-143. Farmer L (1995) Personal communication. Kessler S (1979) Genetic Counseling: Psychological Dimensions. New York: Academic Press. Mills MC (1985) Adolescents reactions to counseling interviews. Adolescence 20(77):83-95. Ponton L (1993) Issues unique to psychotherapy with adolescent girls. A m J Psychother 47(3):353-372. Quaid K (1993) Reply to Sharpe. A m J Med Genet 49:354. Santelli J, Beilenson P (1992) Risk factors for adolescent sexual behavior, fertility and sexually transmitted diseases. J School Health 62(7):271-279. Sharpe Neil (1993) Presymptomatic testing for Huntington Disease: Is there a duty to test those under the age of eighteen years? A m J Med Genet 46:250-253. Smilkstein G (1978) The family APGAR: A proposal for a family function test and its use by physicians. J Fam Pract 6(6):1231-1239. Trad P (1993a) The ability of adolescents to predict future outcome. Part I: Assessing predictive abilities. Adolescence 28(111):533-555. Trad P (1993b) The ability of adolescents to predict future outcome. Part II: Therapeutic enhancement of predictive skills. Adolescence 28(t 12):757-780. Tunis S, Golbus M (1991) Assessing mood states in pregnancy: Survey of the literature. Obstet Gynecol Survey 46(6):340-346. Uzark J (1992) Counseling adolescents with congenital heart disease. J Cardiovasc Nursing 6(3):65-73. Varekemp I, et aL (1993) The use of preventive health care services: Carrier testing for the genetic disorder hemophilia. Soe Sci Med 37(5):639-648. Vriend J, Dyer W (1973) Counseling the reluctant client. J Counsel Psychol 20(3):240-246. van der Pligt J, Richard R (1994) Changing adolescent's sexual behavior: Perceived risk, selfefficacy, and anticipated regret. Pat Ed Counsel 23:187-196. Wertz D, et al. (1994) Genetic testing for children and adolescents. Who decides? JAMA 272(11):875-881.
Genetic Counseling for Pregnant Adolescents 1 ~ s h a Peters-Brown 1,3 and Lorraine Fry-Mehltretter 2
The genetic counseling literature has a paucity of information on how to provide genetic counseling services to adolescents, especially those who are pregnant. The adolescent population should be viewed as a separate culture, complete with their own beliefs and viewpoints, which are dependent upon the developmental growth tasks of puberty. The completion of these tasks is complicated by pregnancy, which has its own set of developmental goals. The adolescent struggle with developmental goals interferes with the ability to identify consequences, predict future outcomes, and communicate self-revealing statements or decisions effectively. Instead, the adolescent has an egocentric frame of reference and seeks peer approval. The genetic counseling dilemmas presented by pregnant adolescents are illustrated through two case reports. A model based on our own expenence and a literature review for successful counseling of adolescents is presented, and utilizes the foundation of trust, patience, and nonjudgrnental behavior. Techniques that address the adolescent's concern for autonomy and peer approval are important, and can be achieved through nonthreatenin~ open-ended questions that promote self-expression. Incorporation of these techniques in genetic counseling and in graduate training will enhance genetic counseling services to the adolescent population. KEY WORDS: genetic counseling; adolescents; pregnancy.
INTRODUCTION
Recently, efforts have been made to improve genetic counseling services for different cultural groups through the cross cultural education and 1Laboratory Corporation of America, Research Triangle Park, North Carolina 27709-0000. ZDuke University Medical Center, Department of Obstetrics and Gynecology,Durham, North Carolina. 3Correspondence should be directed to Trisha Peters-Brown, Laboratory Corporation of America, 1912 Alexander Dr., Research Triangle Park, North Carolina 27709-0000. 155 I059-7700/96/t200-0155509.50/i © 1996 National Societyof Genetic Counselors,Inc.
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training of counselors. The adolescent population (ages 11-19) has been overlooked in this effort. The adolescent "culture" encompasses beliefs, rituals, and behaviors that are often not understood by adults, and present special challenges for genetic counselors, particularly in the prenatal setting. While there has been much debate about whether or not to provide genetic testing for those under 18, (Sharpe 1993; Quaid, 1993; Wertz et al., 1994) a subject that will not be addressed here, little information exists on how best to perform genetic counseling for adolescents. We present here the basic elements needed to provide genetic counseling for pregnant adolescents; a review of the psychological development of adolescents, a review of the developmental tasks of pregnancy, a synopsis of the "typical" pregnant teenager, and potential problems encountered in genetic counseling of this population. Two case reports will be presented to illustrate these points, followed by the discussion of specific counseling techniques successful with the adolescent population.
ADOLESCENT DEVELOPMENTAL GROWTH TASKS
Adolescent genetic counseling and informational needs are governed by the developmental tasks of puberty. According to several researchers (Block et al., 1981; Bluestein and Starling, 1994; Ponton, 1993; Mills, 1985; Trad, 1993a), the developmental tasks of adolescence are: • adaptation to physical changes • separation from family and establishment of meaningful peer relationships • individuation (establishment of personal values and beliefs) • identity formation • development of confidence and self-esteem • acquisition of understanding and control of impulses • ability for abstract reasoning • selection of future goals Identity formation includes the concept of sexual identity. Exploration of sexuality is an important aspect of developing peer relationships, and it has been suggested that to react to someone sexually may be necessary for completion of a developmental task (Block et al., 1981). This "reaction" does not need to include sex, but sex surveys and the adolescent pregnancy rate (Block et al., 1981; Trad 1993a; van der Pligt and Richard, 1994) suggest that many adolescents are engaging in intercourse.
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PREGNANCY GROWTH TASKS
Pregnancy is a time of transition with its own set of developmental tasks. Several authors have described the developmental tasks of pregnancy as (Block et al., 1981; Tunis and Gotbus, 1991): • • • • • •
acceptance of the pregnancy emotional incorporation of fetus (narcissistic love) reconsideration of self and role adaptation to physical changes development of maternal/fetal relationship development of a separate identity for the fetus (around the time of quickening) • envisioning a future relationship with infant as a separate individual
Many of these tasks are similar to adolescence, such as identity formation, physical adaptation, and individuation. Pregnancy is also a time of great emotional change; for some it is a positive, fulfilling experience, but for many people stress, anxiety, and depression are common feelings.
THE PREGNANT ADOLESCENT Adolescent peer relationships are supportive of sexual acting out, and society also provides a "supportive" environment for teen sexuality through suggestive advertising and popular literature (Block et al., 1981). As a result, many teenagers from all races, cultures, and socioeconomic stratas become pregnant. Not all, however, stay pregnant. There is unequal access to first trimester abortions, and the adolescent that remains pregnant is more likely to have a poor family support system, poor societal support, have lower academic achievement and be from a lower socioeconomic status (Block et al., 1981; Santelli and Beilenson, 1992). Like many adult pregnancies, teen pregnancies are often unplanned, but some adolescent pregnancies are planned. An adolescent may view pregnancy as the only adult role available due to "unpromising" career or educational opportunities, some seek parenthood to combat loneliness or to maintain closer ties to the baby's father, and some use pregnancy as a means to develop a separate relationship from their family (Block et al, 1981; Bluestein and Starling, 1994; Trad, 1993a). The pregnant adolescent is likely to delay seeking prenatal care, perhaps due to inability to recognize the symptoms of pregnancy, denial of the pregnancy, or lack of support to seek medical care. She may be facing the difficult decisions of abortion and adoption (Bluestein and Starling, 1994).
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The pregnant adolescent may not have completed many of her adolescent growth tasks, as described by several authors (Block et al., 1981; Bluestein and Starling, 1994; Ponton, 1993; Trad, 1993a). Her peer support that was present for sexual acting out may be withdrawn when the pregnancy is known, and the development of peer relationships will be more difficult. Control of impulses, abstract reasoning, and determining future consequences are commonly underdeveloped abilities for a pregnant teenager. She will be struggling with adolescent and pregnancy developmental tasks simultaneously. While the tasks overlap to some degree, there are conflicts between them as well. One pregnancy task is to "reconsider self," and many pregnant adolescents may not yet have completed the developmental task of identity formation. Part of identify formation is separation of self from the family, and this may be complicated by the conflicting pregnancy tasks of first incorporating the fetus as part of self, then later recognizing the fetus as a separate person. The physical adaptation skills may not be easy to achieve; the pregnant adolescent has been adapting to menstruation, hormonal changes, and breast development, trying to feel comfortable in a "new" body. When pregnant, she must deal with a lack of menstruation, different and faster breast development, nausea, the feelings of quickening, and weight gain. This can be a problem in a society where the expectation is to be like the popular super-models, extremely thin and "sexy."
GENETIC COUNSELING DILEMMAS FOR THE
P ~ G N A N T ADOLESCENT Consider that a young woman like the one described above has been identified as being at increased risk for a baby with a birth defect, and has been sent for genetic counseling. In addition to all of the other things she is currently coping with, the genetic counselor is likely to provide her with detailed information about a potential concern for the baby, then ask her to share her thoughts and possibly make a decision about a prenatal test. Adolescents have difficult verbalizing their thoughts, and are prone to self concealment. They have difficulty with decision making. For an adult, the decision-making process involves five steps (Trad, 1993a). • • • • •
identification of options understanding the possible consequences of each option identification of the desirability of consequences assessment of chance a consequence will occur combination of steps according to a personal decision rule
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Adolescents have difficult}, with decision making and other aspects of genetic counseling, such as discussing scenarios and exploring psychosocial issues, because they (Bluestein and Starling, 1994; Ponton, 1993; Mills, 1985; Trad, 1993a, b; Uzark, 1992): • often lack full knowledge about options • may not have the ability to understand complex information, such as amniocentesis or DNA testing, even if presented in simple components • cannot identify consequences due to lack of experience and their egocentric framework • cannot anticipate the chance of a consequence, as they do not possess the ability to predict future outcomes • cannot communicate their decision as effectively, and are preoccupied with assertion of independence • are predisposed to self-concealment and suppress disclosure due to being self-conscious • may be verbally restrained for lack of vocabulary and difficulty in thought organization • are overly concerned with peer approval and social expectations. While these points can apply to all adolescents, those ages 14-17 are least likely to self-disclose (Mills, 1985), are less sure of themselves (Ponton, 1993), and are more likely to be preoccupied with assertion of independence, which can lead to a defensive attitude toward health care providers (Bluestein and Starling, 1994). Adolescents of all ages are often reluctant patients as well. The reluctant patient is defined as one who, if given a choice, would avoid having contact with a health care provider (Vriend and Dyer, 1973). Reluctant counseling patients have been identified in many settings, from school to marriage counseling, and common themes in behavior occur in ever3," setting. Many adolescents do not seek genetic counseling, but are coerced into the situation by circumstances. Some "reluctant" behaviors include: • silence, or minimal, nonverbal communication, such as shrugging. • hostility, overt or covert. The "all-knowing" patient and those in denial fall into this category. Comments such as "I don't need to be here," or "You don't know what you're doing. I know I'm only three months pregnant, not five" despite ultrasound or other findings, are common. • overt compliance. This person views genetic counseling as a hoop to jump through, and essentially "fakes" their way through the process, saying what they think the genetic counselor wants to hear.
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• diversionary tactics. This patient takes care to hide his or her concerns, and redirects the session toward nonthreatening, often insignificant avenues.
CASE REPORTS
With this background, we describe here two case reports that illustrate the potential problems of providing genetic counseling to adolescents, followed by a discussion of techniques that may be useful in counseling this population. Case 1
N.E is a 16-year-old, G2P0 Caucasian female. Her first pregnancy was electively terminated 2 years ago because the patient felt she was too young and not ready, "like she is now." She was referred for genetic counseling by a local health department due to an elevated maternal serum alpha-fetoprotein (MSAFP) of 3.3 MoM, giving her a risk of 1/46 for having a baby with a neural tube defect. At the time of the genetic counseling session, N.E had not yet had an ultrasound. N.E was accompanied to the session by her 17-year-old sister, who had an 18-month-old son at home. Both girls lived with their father and younger brother. The patient's mother was described as an alcoholic who rarely came to visit. An older sister had married and moved away. The family medical history was significant in that N.F. described her younger brother as aggressive, hyperactive, with learning disabilities, a "lazy eye," and a heart defect. She and her sister have performed poorly in school, attended it sporadically, and felt perhaps they were also "mentally retarded." Further evaluation by a medical geneticist and Fragile X testing were offered, and initially accepted. N.E could not, or would not, provide the first name of the father of her child or describe him or his family history other than to say he was Hispanic, responding "I don't know" to questions about him, yet she indicated that he was the same father of her first pregnancy. N.E and her sister were unable to give their own family history beyond their own parents; they could not recall any specifics about aunts, uncles, or cousins. When asked questions regarding the family history, such as how many siblings their parents had, they simply shrugged. N.E was counseled about the nature and implications of her MSAFP result by the attending obstetrician immediately prior to the genetic counseling session, but she and her sister were unable to discuss any of the information provided, and shrugged in response to questions. Further at-
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tempts were made to explain the MSAFP results and the availability of ultrasound and amniocentesis by the genetic counselor in a variety of ways. This included encouraging the patient and her sister to discuss their perceptions and feelings of the MSAFP results, the amniocentesis, and risks to the pregnancy, but neither N.F. or her sister expressed any interest in doing so. They continually interrupted the session and redirected the conversation by asking if the watch the counselor was wearing was from Taco Bell, why she looked different than her identification badge, how many people worked at the medical center, etc. N.F. and her sister seemed to avoid potentially emotionally distressing topics, such as possible fetal anomalies, and attempts were made to directly address their possible concerns by asking questions like, "Does this scare you?" An effort to build trust was made by trying to discuss related but seemingly neutral topics, such as "did you wait long to check in today?" No answers were obtained. The session eroded completely when the counselor's pager went off; both N.F. and her sister thought the pager was "the coolest thing," and wanted to know all the specifics about the pager and the pager system at the medical center. From that point onward, it seemed that N.E and her sister no longer viewed the counselor as a medical professional, but rather as a "cool" peer who could afford a beeper. After the genetic counseling session, an ultrasound was performed. N.E accepted the offer of the ultrasound only because she wanted a picture of the baby. She did not ask about the presence or absence of fetal anomalies. She declined amniocentesis, citing fear of the needle as her reason. After the ultrasound procedure, she also declined further evaluation by a medical geneticist and fragile X testing. This session was frustrating to the genetic counselor because of the difficulty on the part of the counselor to assess the patient's knowledge, to deal with psychosociat issues presented by the patient, and to effectively control the session. Case 2
S.B. is an 18-year-old Caucasian female with moderate to severe cystic fibrosis (CF). She has been followed in the pediatric pulmonary clinic for her CF for a number of years and has kept her appointments fairly regularly. She requested pre-conceptional counseling with a Maternal-Fetal Medicine specialist to discuss the implications of CF on future pregnancies. At that time she was informed that many pregnancies of mothers with CF have been reported, most with successful outcomes for both mother and infant. However, as pulmonary and pancreatic function can dramatically
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affect the patient's prognosis, she was strongly urged to contact her pulmonologist prior to pregnancy to review these issues in greater detail. S.B. conceived without meeting with her putmonologist and sought genetic counseling very early in her pregnancy. She arrived at her first session with the father of her pregnancy, her 17-year-old boyfriend. She had recently graduated from high school, was living with her mother, and hoped to move in with her boyfriend in the near future. S.B. also stressed that they had been trying to get pregnant for some time and knew that this "was the right thing to do despite what my pulmonologist and everyone else thinks." She gave us permission to discuss her care with her pulmonology caregivers, other than a social worker whom she felt had not consistently supported her decisions and would be disappointed in her. S.B. also felt that her mother, despite their close relationship, did not understand her desire to have a child. The genetic counseling session covered an evaluation of multiple medications, vitamin/mineral supplements and enzyme preparations, family history, CF carrier risk of S.B.'s boyfriend, CF risk to the fetus, DNA testing, and potential prenatal diagnosis. S.B. knew a fair amount about her disease, but had little knowledge about DNA testing, and its potential implications. A variety of scenarios were presented depending on carrier testing results. The couple hoped that the fetus' CF risk was low, but did not appear to be concerned with the possibility of a 50% risk and did not anticipate wanting prenatal diagnosis in this situation. They did opt for DNA testing which revealed that S.B. is a delta F508 homozygote, while her partner was negative for 32 mutations. His carrier status therefore, decreased to less than 1 in 100, with the risk of an affected fetus calculated to be less than 1 in 200. A follow-up counseling session was scheduled but postponed multiple times by the patient. Therefore the results of testing were given by telephone and in writing. S.B. continued to be seen in our Maternal-Fetal Medicine Clinic until she requested to transfer her care to a city closer to her home, as plans to move in with her boyfriend did not come to fruition. We attempted to obtain follow-up at the time of her delivery; however, her telephone was disconnected with no forwarding number.
TECHNIQUES FOR COUNSELING ADOLESCENTS
As these cases illustrate, many communication barriers and resulting frustration can exist when providing genetic counseling to adolescents. Open communication is essential for good genetic counseling. Successful techniques for counseling adolescents have been reported in the literature
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for other disciplines (Bluestein and Starling, 1994; Mills, 1985; Ponton, 1993a, Trad, 1993a, b; Uzark, 1992; Vreind and Dyer, 1973; Varekamp et al., 1993; van der Pligt and Richard, 1994). We have found that many can easily be incorporated into genetic counseling. The following is a suggested model for genetic counseling of adolescents based on our review of the literature and personal experience: • Build trust through guaranteed confidentiality. This requires you to know the laws of your state regarding the "emancipated minor." In some states, even with a pregnant patient, you may be required to reveal aspects of the genetic counseling session to the parents or legal guardians. By contracting with the adolescent's family in advance, when possible, about the issue of confidentiality, the adolescent patient can be given honest information up front about his/her confidentiahty. It is also important to know the precedent set for the particular center in which you work. Even though the state law allows a pregnant teenager autonomy in making decisions about her pregnancy, a particular facility may still require consent of the adolescent's legal guardian for a procedure like an amniocentesis or another genetic test. • Have patience. Understand that the average adolescent may be preoccupied with self-assertion and peer approval. The signs of this may be subtle; a teen may appear to listen to you carefully but choose the opposite of what he/she thinks you may want him/her to do. Be wary of the older, more mature adolescents. In many situations, they have the capacity to act as an adult, but may revert to earlier developmental stages in a perceived crisis. • Be nonjudgmental. The benefits of this approach are seen in case 2. S.B.'s social worker had advised her against pregnancy and attempted to steer her toward other goals. As a result, she refused all contact with her social worker when she became pregnant, and reluctantly allowed contact only with health care providers necessary to her care. Likewise, her mother, a potentially strong support person, was alienated by S.B. although she reported they had a close relationship. The genetic counselor approached the case in a nonjudgmental manner, offering support of the pregnancy. As a result, S.B. looked to her as an ally, even calling for assistance with nongenetic counseling related issues, such as scheduling routine appointments. • Explore family and social environment using nonthreatening questions. A good example of these questions are based on Smilkstein's Family APGAR, a questionnaire designed to assess family functioning (from Bluestein and Starling, 1994):
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• • • • •
Do you enjoy being with your family? Can you turn to your family when something is bothering you? Can you talk to your family? Does your family get upset when you try something new? Does your family get upset when you express strong feelings?
We have found these questions and other closed-ended questions can be used to build trust and communication since the patient can answer simply yes or no, or even nod. This type of questioning seems to work especially well with the minimal communicator, the adolescent who shrugs or is silent. Once communication is established, open-ended questions can then be used to further explore any psychosocial issues presented by the patient. Do not say, "I know how you feel." • Use visual aids to help define risks. Most genetic counselors use visual aids to help describe chromosomes, patterns of inheritance, or prenatal diagnostic procedures, but do not use aids in helping define risks. Use of a untitled bar graph, labeled from 1 to 10, can be used for a variety of purposes. For example, one genetic counselor suecessfully uses this technique to discuss possible pain from the amniocentesis. She asks the person considering the procedure how much they think the amniocentesis will hurt, with 1 being the least pain and 10 being the most. She can then give the patient a "visual idea" of the pain, since most women in her clinic describe the amniocentesis postprocedure as a "three" (Farmer, 1995). The untitled bar graph could be used for other aspects of genetic counseling for adolescents as well. The bar graph could allow an easy way for the patient to describe his/her feelings, without the risk of too much selfrevelation or having to verbalize complex emotional thoughts. For example, one could ask, "On a scale of 1 to 10, how worried are you about the baby?" or "On a scale of 1 to 10, the chance your baby has a problem is." This technique has value in that it provides another avenue for communication. In using this technique and others, though, it is important to remember that adolescents do not perceive themselves as vulnerable. They have the attitude of "it won't happen to me" (van der Plight and Richard, 1994). • Use therapy techniques designed to obtain self-revealing and selfreferenced statements. The use of the usual self-revealing techniques used in genetic counseling, such as probing and reflecting (Kessler, 1979), are often ineffective with adolescents because they require self-retrospection, an underdeveloped ability for most teens. One technique described in the literature involves the use of a written model, such as a vignette of an adolescent in similar circumstances.
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This has been described to be a stimulant of self expression for some nongenetic counseling therapies. The patient is asked to read a written model and is then asked to discuss the same topic. As peer approval is very important, the written model should include "thought provoking statements from peers." While we have not yet had the opportunity to incorporate and research peer statements in our counseling literature, we have found that providing written materials, such as a simple description of the MSAFP test or amniocentesis, has been very helpful. It allows the adolescent time to review the information at her own pace, share the information with family and peers, and seems to help with thought organization and self-expression. Written materials may not be effective will all adolescents, though. Like any patient seen by a genetic counselor, the adolescent may not be at the educational level necessary to read or interpret the literature provided. A second technique uses open-ended questions that utilize the patients' concern for peer approval and avoid direct self-revealment, such as: • • * •
What would you tell your best friend to do in this situation? Do you think your best friend would be scared? Are you like your best friend? How are you different?
A third option is use of the "anticipated regret model." This technique uses discussion of potential regrets and worries for possible outcomes prior to any consequence of a decision. Consequences of particular decision need to be presented to the adolescent, and then ask of him/her easy to answer questions, such as "Would you feel bad if this happened?" Adolescents have a difficult time answering questions such as "How do you feel about this?" It is helpful to alter the time perspective by describing a future event in detail, then asking specific questions about the "anticipated regrets" before and after the event. The anticipated regret model is similar to the structured scenario technique already employed in genetic counseling (Arnold and Winsor, 1984), but requires the counselor to break the scenarios and potential outcomes down into smaller components for discussion. This technique works best when effective communication and trust has already been established. e If possible, create a long-term plan, through short-term steps, with the patient. Adolescents have difficulty with the concept of future outcome, and for this reason cannot communicate long-term predictions or consequences. The review of each aspect of the decision-
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making tree in detailed, small increments with structured scenarios and use of anticipated regret will help the adolescent make a personal, informed choice. This has worked well and is especially important for the adolescent who requires long term follow-up, such as a high risk patient, or one with identified fetal anomalies. For example, A.B. is a 17 year old seen recently in our clinic. She presented late for prenatal care because she had an elevated maternal serum alpha-fetoprotein and an intrauterine fetal demise in a prior pregnancy and was afraid of facing the same issues. Ultrasounds at 18 weeks and 23 weeks after an elevated MSAFP revealed that her baby was growth retarded. She was subsequently diagnosed with lupus. When future appointments at our facility were discussed, she did not wish to return for "more bad news," and hoped to deliver in the community hospital close to home. Her physician did not wish to follow her further because of the lupus, and her local hospital did not have a tertiary care nursery or the support needed for her baby at birth. The purpose for receiving care and delivering at our center was discussed at length with A.B. and the anticipated regret model was used to explore potential "consequences" of not keeping the appointments. A.B. became very motivated on behalf of her baby after this discussion, and while she was not able to keep all the appointments, she tried very hard and would call in advance to cancel and reschedule. A few weeks later, it was necessary to admit A.B. to the hospital, and her baby was delivered at 28 weeks. Had A.B. not kept her appointments, the physicians may have missed the window of opportunity to intervene on behalf of A.B.'s health and that of her baby. Be versatile! Adolescents can surprise you. For reasons not obvious to the counselor, an adolescent who is communicating well may suddenly stop talking, or the teen who only shrugs her shoulders may begin to discuss psychosocial concerns. You may have to switch techniques midsession.
DISCUSSION
In reviewing the two cases presented, it is possible to identify areas in which the use of the above mentioned techniques would have been beneficial. In Case 1, communication was poor, and it was difficult to know what the patient understood from her conversation with the doctor and the genetic counseling session. She communicated almost entirely nonverbally, by shrugging her shoulders, or redirecting the conversation to more neutral
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areas, typical of the reluctant patient. Use of closed-ended questions designed to learn more about a patient's family and beliefs as described previously may have increased interaction about psychosocial issues, and subsequently increased trust. This may have allowed for transition into the techniques designed for self-revealment. A written vignette or the use of the described open-ended questions, as well as special visual aids, may have allowed the patient to express herself more easily. These techniques were utilized in a counseling session by the same counselor in a similar situation a few weeks later. The latter session was very similar; a 15 year old girl was referred for genetic counseling due to an abnormal MSAFP and she attended the session with her 20 year old cousin. Traditional genetic counseling was not successful, and communication problems arose. The techniques described above for exploring family issues were employed with satisfactory results. The adolescent in the case was more able to talk about sensitive issues, including her pregnancy and the abnormal MSAFE However, techniques utilizing peer approval strategies were not successful with this patient. When asked what she thought her best friend would do in this situation, the adolescent stated, "I don't know, she's never been pregnant." It became clear from her answer to this and other questions that her peer approval group had been altered to differentiate between pregnant and nonpregnant friends, and this patient had no pregnant friends. This may be a limitation of using peer approval based techniques in the prenatal adolescent population. The patient with cystic fibrosis in Case 2 sought genetic counseling, and therefore the counselor did not have to overcome the communication barriers presented by a reluctant patient. However, this patient did not understand the potential consequences of her decision to get pregnant. On the surface, S.B. appeared to be a responsible young adult who had planned her pregnancy knowing what difficulties might lay ahead though she had no specific plans for supporting her child, looking for work, moving in with her boyfriend, or providing care for herself and her child should she become ill. When asked about some of these issues it became evident that the boyfriend would actually have limited involvement raising their child and that the couple assumed S.B.'s mother would "help out." S.B.'s main reason for getting pregnant was to accomplish something significant before her death, as she did not believe she had enough time to complete college or embark on a career. As previously discussed, pregnancy is commonly sought in some adolescents who are ill or feel that their education and career opportunities are unpromising. While the genetic counselor did have an opportunity to interact with S.B. very early in her pregnancy, and provide DNA testing and results, it may have been more effective to create a long-term plan using the antici-
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pated regret model and written vignettes. The genetic counselor also felt that a referral for additional psychosocial counseling was appropriate, but this was declined by S.B. as she felt she did not want to be "lectured to." Genetic counseling is a new profession, still developing in its processes and techniques. While much debate exists on what types of services to make available to adolescents, such as carrier screening, it is clear that some services must be offered, such as prenatal testing. Genetic counselors need to be prepared to provide effective counseling to this important population. Methods for adolescent counseling must be researched and incorporated into graduate training. In this way, counseling services can be tailored to the adolescent "culture" and developmental level, improving the adolescents' abilities to understand and appreciate the issues they face.
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