Education in youth-friendly genetic counseling.

Abstract

Genetic counselors have long recognized the challenges of working with adolescents and young adults (AYA) and their families. In 2010, a framework of Youth-friendly Genetic Counseling was developed by an expert reference group with the aim to improve both care for AYAs and the experience of health professionals delivering that care. Subsequently, an education workshop was developed aimed to upskill genetic health professionals in youth-friendly genetic counseling. The workshop was piloted with genetic counselors in Australia and New Zealand. A purpose designed, pre- and post-workshop survey and post-workshop focus group was utilized for evaluation. Mean confidence scores increased pre- and post-workshop. Participants also demonstrated increases in knowledge regarding: adolescent development; developmental theory; social factors impacting on health; the needs of young people; practice challenges; youth-friendly engagement, communication, consent and confidentiality; practice approaches; principles of adolescent healthcare; ethical issues; and available services and resources. Focus group data revealed several themes relating to practice challenges, learning gains, barriers, and enablers to clinical translation and workshop feedback. Results demonstrate utility of the workshop in up-skilling genetic health professionals in the provision of youth-friendly genetic counseling. Consideration of adaptation and sustainability, by embedding this theoretical and skills-based workshop as a module within genetic counseling education, is required to ensure practice competence and the best health outcomes for young people and their families.