The mean age for onset of symptoms is during the mid-childrearing years, when many families already have children. As HD progresses, the person with HD (pHD) requires increasing assistance with day-to-day functioning and ultimately becomes totally dependent on others for care. The majority of pHDs are initially cared for by their families at home, but many eventually require care in nursing homes or other long term care facility toward the end of life (Bergeron, 2004; Paulsen et al., 2006; Rosenblatt, Ranene, Nance, & Paulsen, 1999; Williams et al., 2007). Because the mean age of death is 15 years from the onset of symptoms, teens in these families may not only witness the onset of HD symptoms in a parent but may also be witness to the disease's progression, the transition of the pHD from home to long term care facility, and death.

Studies of families with HD have focused primarily on caregiver stress in adult family members and decision-making dilemmas surrounding predictive genetic testing for the pHD and other adult family members (Cox, 2003; Sobel & Cowen, 2000; Taylor, 2004; Williams, Schutte, Holkup, Evers, & Muilenburg, 2000). Teens growing up in a family with HD have rarely been included in family studies. This may be because the caregiving research has primarily focused on adult caregivers in the home. Further, decision-making studies have also focused on adults, since current guidelines dictate that teens at risk for HD under the age of 18 are not yet eligible for predictive genetic testing.

For youth at risk for HD, the research has primarily focused on whether individuals must be 18 years of age or older to receive predictive genetic testing for HD (Fryer, 2000; Gaff, Lynch, & Spencer, 2006; Richards, 2006). Although this age designation does not apply for all genetic diseases, it is applied to adult-onset diseases, like HD, for which no known intervention is available to delay disease onset, clinical progression, or fatality. The case against predictive genetic testing for minors (< 18) in these circumstances most often claims that maturity of judgment in decision-making is not sufficiently developed until late adolescence (18-21) (Cauffman & Steinberg, 2000; Richards, 2006) as well as the potential for long-term psychological effects and harm (Richards, 2006; Timman, Roos, Maat-Kievit, & Tibben, 2004). In addition, the potential for genetic discrimination and other long-term consequences of the identification of genetic risk in childhood or adolescence on later insurance options, health care support, education, and employment opportunities are unknown (Shinaman, Bain, & Shoulson, 2003). The argument for predictive testing for minors in these circumstances introduces the possibility that psychological harm may be caused by withholding testing (Binedell, Soldan, Scourfield, & Harper, 1996; Duncan, 2005; Duncan et al., 2008). These researchers reference the paucity of research with teens and the lack of empirical evidence that predictive genetic testing in these circumstances causes harm. Instead, they highlight the potential benefits for minors, as they begin to focus on decision-making about their futures, including education, career, and reproductive behaviors. They also emphasize the potential for psychological relief from the not knowing or uncertainty (Duncan, 2005; Duncan & Delatycki, 2006; Duncan et al., 2008.; Richards, 2006).

Adolescence is a critical period for the establishment of lifelong health-related behaviors and attitudes. It is also a time when developmental and health trajectories can be altered in positive or negative directions depending on the interpersonal contexts in which they occur (Holmbeck, 2002). To date, little research has focused on the experiences of teens growing up in families in which one of its members has HD. Research studies are now just beginning to explore teen experiences, especially in families with heritable conditions (Holt, 2006; Van der Meer et al., 2006).

Three recent studies begin to look beyond the adult experience in families with HD and highlight the need for continued exploration of teen experiences in these families (Forrest, Miedzybrodzka, van Teijlingen, McKee, & Simpson, 2007; Vamos, Hambridge, Edwards, & Conaghan, 2007; Van der Meer et al., 2006). In the first of these studies (Forrest et al., 2007), the participants included some teens, but in general were older (M=21). However, the authors noted a small subgroup of participants under age 18 carried out significant caregiving tasks and assumed increased responsibility for the affected parent. They caution the reader that such increased responsibility may have a detrimental impact on young caregivers' education, health, social, and emotional well being, and that the age at which a teen became aware of the inherited nature of HD could be associated with teen adjustment issues.

In the second study, Vamos and colleagues (2007) explored the impact of HD on family members. The research was retrospective, recalled by adults who grew up in families affected by HD. Adverse parenting experiences and the quality of family functioning were reported. Low family cohesion and expressiveness and high levels of family conflict were identified, with adverse parenting behaviors experienced from both the pHD and nonHD affected parent. The authors suggest the effects of HD on the entire family unit may be underestimated and far-reaching.

The third study (Van der Meer et al., 2006) also notes the effects on family, including children and teens. Their study focused on the presence of role reversal (i.e. child caring for parent) and parentification (i.e. when unaffected parent looks to a child as a substitute partner) in the children and teens in families with HD. Participants in this study were also adults, rather than teens, who looked back at their experiences. Being raised by a parent with HD revealed lower attachment representations in participants later in life. Unresolved and disorganized attachment representations were significantly higher if the pHD died or had psychiatric hospitalization before the participant was 18 years old.

Each of these studies underscores the potential effect of stressful life experiences for teens in families with an adult member with HD. These experiences are especially important to explore as we consider teens are already in the midst of establishing health behaviors and beliefs that will have long-term implications in terms of their understanding of health, risk, and behavior.

This early body of evidence suggests that teens in HD families may be exposed to increasing responsibilities and stressors beyond the typical developmental challenges of adolescence. In addition, adult family members may not be able to provide these teens with needed support and guidance due to the effects of HD, family stresses, or coping limitations (Vamos et al., 2007). Health care providers, teachers, and guidance counselors are often the primary adults, other than parents, teens see repeatedly throughout adolescence. The ability of these professionals to engage teens in a health-promoting process is directly tied to a readiness to hear their stories and consider the context of their lives. Yet, little is known about the experiences these teens live with and what they mean in the teens' lives.

The teens expressed an overall sense of living in the shadow of an overwhelming disease. This pervasive influence is reflected in each of the four themes identified in the analysis: 1) Watching and waiting; 2) Alone in the midst of others; 3) Family life is kind of hard; and 4) Having to be like an adult (Table 2).

Adolescence is often thought of as the transitional period between childhood and adulthood (Holmbeck, 2002). Typical adolescents struggle with rapid physical changes, body image, peer relationships, and identity (Driessnack, 2006). Their wellbeing depends on the teens' developing independence, sexual identify, cognitive expansion, moral maturation, and preparation for an adult role in society (Smetana, Campione-Barr, & Metzger, 2006). For those teens living in families with HD, typical adolescent struggles remain invisible in the shadow, subsumed under the challenges HD exerts on the family as a whole. The teens shared experiences that focused not on their own adolescent developmental changes, but instead reflected the impact of HD on their entire families. Further, while typical teens often complain their parent(s) are too present, these teens talked about the absence of parental presence in their lives. They watched as the parent with HD slowly disappeared emotionally and physically and the non HD parent took on additional roles, often working overtime, or at more than one job, to make ends meet.

For many teens, peer groups typically represent vehicles for movement out of and away from the family, and as such provide a means of achieving independence and individuation (Driessnack, 2006). However, many of these teens had limited peer support and involvement. Although many had friends, the teens shared that their friends could not really understand what it was like to live with a pHD, and for some, their lives at home and with their friends were kept separate. This need for peer contact and support, while securing time to be a teen, has been reported in studies of other young caregivers (Lackey & Gates, 2001; National Alliance for Caregiving, 2005). Opportunities for interaction with other teens in other HD families may offer these teens much needed peer contact and support (Table 3).

Genetic counselors acquainted with families with HD may be in an ideal position to establish trusting relationships with family members, including teens. Understanding the context of these teens' lives is also essential for health care providers and other trusted adults, such as school counselors, who can engage teens in health-promoting behaviors and opportunities (Ginsburg, 2007). Timely, supportive interventions at this critical developmental stage may prove valuable in mitigating the effect of numerous stressors on the teen and promote a healthy progression to young adulthood. The teens in this study reported feelings of being alone even though they were often surrounded by family and friends. They reported that life at home was hard and they were having to take on adult roles and responsibilities that often interfered with normal adolescent activities. This is an important call to action for anyone encountering these teens. It is especially a call to health care providers and genetic counselors who may be focusing only on the pHD and adult caregivers. The findings of this study highlight the importance of asking about teens in the family and creating opportunities to begin or continue a dialogue with them.

For most of the teens in this study, this was their first opportunity to meet other teens in similar life circumstances. It was also their first opportunity to participate in research, which many found to be empowering (Pehler et al., 2008). These data suggest that teens in HD affected families may talk about their experiences when there are opportunities and those who are prepared to listen. In addition, health care providers and genetic counselors may be in the best position to provide resource information to the teens and their parents, support parents in developing the skills to talk to their teens, and identify potential peer contacts. Only two of the 32 teens attended a HD National Youth Alliance conference where resources and network opportunities are available for teens (See Table 3).

Teens in each of the focus groups addressed the issue of predictive genetic testing and decision-making dilemmas. While adolescence is a period of development during which teens begin to make many “adult” choices, from developing relationships to contemplating life trajectories and career choices, the current guidelines for predictive genetic testing for HD specify 18 years of age as the minimum age to be given the responsibility to make this decision. Some providers find the current guidelines to be unhelpful, and suggest they may need to be updated related to current concerns and practices (Multhaupt-Buell et al., 2007). The findings from this study suggest teens 14-18 years of age are actively considering this option. While we are not currently advocating for or against lowering the age when predictive testing for HD is available, our study clearly illustrates that many teens want, and need, to talk about it. Perhaps, as we understand more about teens' experiences in these families, we will find that there are teens for whom testing should be legitimate and possible.

Members of HD testing and management teams can facilitate conversations between parents, teens, and the health care community about predictive testing and decision-making these teens will face after they reach age 18 (Duncan, 2005; Duncan et al., 2008). These opportunities may help teens offset their current risk status by increasing their sense of control over their future. In their recent study, Quaid and colleagues (2007) explored the experiences of adults who chose not to discover their actual mutation status and found that many achieved a “remarkable balance between living at risk and living with hope”. The basis for this balance may be established and influenced by experiences throughout their teen years. Longitudinal studies that follow children in HD families over time may shed considerable light on how young at risk family members approach later decision-making about predictive testing and their resultant mutation status results. However, gaining access to these young at risk family members and securing their cooperation in research studies, may be difficult if their experiences are not further understood.

As advances in genomic research continue to identify inherited risk for more diseases, it is important to explore what the experience of being at genetic risk means to the individual and the family. The Family Systems Genetic Illness (FSGI) model may provide one way to provide context for the findings from this study. The FSGI uses a family-centered approach to understand how awareness of genetic risk influences experiences, coping, and adaptation over time for all family members and relationships (Rolland & Williams, 2005) . The time trajectory extends from initial awareness of possible genetic risk, through consideration and decisions about genetic testing, and encompasses the initial and long term adaptation of living with the genetic information and, for some, the development of the condition. Using the FSGI, teens under 18 in HD families are in the Non-symptomatic Awareness phase. However, since predictive genetic testing for HD is available for persons age 18 or over, teens then transition to the Crisis Phase I: pre-testing phase. Teens, aware of the possible genetic risk, “may experience life as the worried well, living in fear or with a sense of inevitability that they will eventually develop the disease” (p.11). Yet at the same time, due to the symptom manifestations experienced by the pHD, teens also find themselves in the FSGI Long-term Adaptation phase. Teens' lives are complicated by living in the Non-symptomatic Awareness phase and preparing to enter the Crisis I: pre-testing phase, while, as a part of the family unit, simultaneously experiencing the long-term adaptation to the reality of having a family member with clinical HD. The FSGI model provides one mechanism to visualize the complex lives these teens are experiencing.