Peer-to-Peer Counseling for Individuals Recently Tested Positive for Huntington's Disease

Huntington’s disease (HD) is a hereditary condition that affects the brain and nervous system. The gene associated with HD was identified in 1993 and was one of the first conditions for which presymptomatic testing became available, allowing individuals to know that they will develop this disease in the future. Genetic counselors provide information about HD to individuals along with the necessary support to cope with this knowledge. Peer-to-peer programs have been widely successful in helping individuals cope with various medical conditions, but have not been applied to the HD community. The public health significance of this project was identifying that presymptomatic individuals within the HD community following their positive test result need additional support and offered peer-to-peer counseling as a solution to this health issue. Common associated problems among these individuals are increased stress, depression, and feelings of isolation. A peer-to-peer counseling program for those who undergo genetic testing should be successful and a service genetic centers could easily incorporate into existing clinical practice to improve the overall health within the presymptomatic HD community. The purpose of this study was to develop, implement, and evaluate a peer-to-peer training program for individuals who have tested positive for the HD gene mutation. Twenty participants were recruited on a voluntary basis from the HD community in Pittsburgh, PA who had previously tested positive at least one year prior, and two participated in the training to prepare the mentors with the necessary skill set and knowledge for counseling and providing support to their peers. After the training, a survey evaluated the usefulness, content, and presentation of the material, allowing the researchers to identify areas in need of change in the training manual. The findings of the surveys revealed that the content of the training was well received and helped better prepare the mentors for their role in peer-to-peer counseling. Volunteers reported being well prepared for the peer support role. In the future, mentors will be paired with a peer who has recently tested positive and surveys will evaluate their satisfaction with a peer-to-peer program