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Abstract

Many families with a family history of breast or ovarian cancer will request genetic testing to ascertain whether family members carry the gene mutation. The gene test results will indicate whether women need to undergo additional screening measures and receive prophylactic treatments to reduce their risk of developing cancer. Whilst many families welcome the opportunity to receive this additional surveillance a major concern that continues is when and how parents should talk to their children about the cancer and hereditary risks. We carried out semi-structured qualitative interviews with 11 families, which included parents, children (7-11years) and young people (12-18 years) to learn more about families� experiences about managing these sensitive conversations and the effect upon their family functioning and coping with the risk information. The interview transcripts were coded and thematically analyzed. Four themes emerged from the data on family communication, perception of cancer risk, managing risk and the impact of genetic risk upon children and young people�s decision-making. Our findings showed that parents were worried for their children but only discussed a limited amount of information about the cancer risk and particularly about the psychological effects of prophylactic measures. Children and young people often did not realize implications of prophylactic procedures, especially bilateral mastectomy and breast reconstruction. With contemporary Western society�s acceptance of cosmetic surgery, many children and young people focused predominantly on the perceived positive benefits without realizing more fully the physical and psychological consequences of managing the risk information and the outcomes of surgery.

Biography

Email: Alison.Metcalfe@kcl.ac.uk