Next generation communication about hereditary cancer

Individuals with a BRCA1 or BRCA2 pathogenic variant have an increased risk of developing breast, ovarian and prostate cancer. Offspring have a 50% chance of inheriting the pathogenic variant. At-risk young adults informed of their risk are often contemplating family planning and risk management choices. Few studies have explored communication processes regarding disclosure of genetic status from parents to young adults from the perspectives of all family members. This thesis includes: 1) a systematic review of young adults’ family communication experiences, risk perception, and cancer knowledge; 2) semi-structured interviews with young adults’ about their need for genetic information; 3) family interviews exploring the collective family experience with communicating genetic risk; and 4) focus groups and semi-structured interviews with genetic health professionals (GHPs) about the perceived needs of at-risk young adults, the challenges the GHPs experienced in supporting families during disclosure of genetic results, including strategies and training needed to support this process. In brief, young adults were not satisfied with the resources offered and although genetic information was accessible, the collective family’s experience with cancer influenced perceptions towards hereditary cancer information. Six key themes were identified exploring responsibility, gender, family culture, adversarial growth, key events, and GHPs role in supporting families. A lack of understanding of the importance to inform others and wider family systemic issues were challenging for GHPs. Strategies to address challenges include the management of appointments to accommodate family dynamics, family letters, and follow-up appointments. Clinical practices across Australia vary due to legislation. This thesis is the initial stage of exploration required to understand the perspective of young adults, relatives, and GHPs, before the development of an intervention to improve disclosure rates