The findings in this study begin to shine a light on teen experiences in families with HD and how these experiences may challenge these teens' current and future wellbeing as well as influence their current and future decision-making (Forrest et al., 2007
; Vamos et al., 2007
; Van der Meer et al., 2006
). The teens shared experiences and concerns about both of their parents, themselves, their families, and their peer relationships. Although these experiences were separated in order to identify common themes, they were not isolated from each other in the teens' descriptions of their lives. It appeared that their experiences were overshadowed by the presence of HD and unable to be interpreted without its presence. Furthermore, the teens did not choose to share experiences from outside this shadow, despite repeated opportunities.
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 ().
Huntington Disease Resources for Teens
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 ).
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
) 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.
Although this study is among the first to report on teens' experiences, as expressed by teens themselves, the study has some limitations. First, only those teens whose parents gave permission were enrolled in the study. Some parents declined to enroll their teens. They stated their teen would be too reluctant to talk about HD or they feared the experience would be too stressful (Pehler et al., 2008
). It is not known what other teens, not identified by or known to HD site coordinators, may have contributed to the discussion.
This study was part of a larger research project that focused on family members' concerns and the strategies used to cope with these concerns. The primary focus on concerns may have led to an over representation of negative experiences and an under representation of positive ones. Further research may identify components of teens' experiences that are beneficial and contribute to positive aspects of their lives and transition into adulthood.
Today, teens in HD families today are facing multiple challenges, witnessing the pHD's ongoing decline, while simultaneously considering the likelihood that they themselves will experience the same disease. Although teens are in the midst of family and friends, their experiences set them apart from those who ordinarily serve as sources of support and understanding. These insights may be of value to health care professionals who have the opportunity to explore ways in which to support these teens and their families.