Table 2.

Themes of Teen Experiences

Watching and Waiting Watching from the Shadow of HD ○ Observing pHD deterioration while being unable to change disease progression ○ Observing effect of health changes on family o Anticipating the future course of disease in pHD Waiting in the Shadow of HD ○ At risk for HD but in pretesting time due to age ○ Reflecting on future decision-making regarding genetic testing ○ Little discussion of future plans beyond genetic testing

Alone in the Midst of Others Isolation in the Family ○ Loss of Meaningful Communication with pHD ○ Decreased availability of non-HD parent The personal reality of genetic risk Separate from Peers ○ Impeded social interaction ○ Lack of peer understanding and support

Family Life is Kind of Hard Family Stress Conflict in the Home ○ Between parents ○ Among family members Financial Strain

Having to be like an Adult Caregiving of the pHD Caring for the non-HD parent Assuming home management responsibilities Wanting to have less responsibility