The strategies of parents who tell their daughters about the possibility of being a haemophilia carrier

Abstract Introduction Women who carry the haemophilia gene have a genetic risk of having a son with haemophilia, as well as the risk of abnormal bleeding; thus, there is an increasing interest in ‘carriers’ as subjects that potentially require medical support. However, in Japan, only about half of individuals with a family history of haemophilia inform their daughters that they may be carriers. Aims The purpose of this study was to identify strategies used by parents to inform their daughters about their possibility of being haemophilia carriers. Method Parents of daughters with confirmed or suspected carrier status, based on family history, were included in the study. A semi-structured interview was conducted, and data were analysed qualitatively using an inductive approach. Results Eight parents (two men, six women) were included. The mean age of participants was 58 (range: 44-70) years; interviews lasted 76 minutes on average (range: 49-100 minutes). Data showed that parents align their values with each other and share information about their daughters between them (information sharing between partners). They also adopt roles according to sex. Mothers often played the primary role in the process of sharing information with their daughters as they are of the same sex. Since all daughters of fathers with haemophilia would be confirmed carriers, fathers were more concerned about how their daughters might react and had more guilt about their daughters. Parents also attempted to prepare for informing their daughters about haemophilia by observing their stage of mental development to determine the optimal timing to have these conversations. When sharing information about haemophilia, parents were careful to inform their daughters while considering their feelings to ensure that daughters received the information in a positive light. After sharing information about haemophilia, parents played the role of ‘daughter’s supporter’ by confirming their level of understanding and their feelings and considering possible ways to support them in the future. Conclusion Assessment of carrier status can only begin if parents tell their daughters about the possibility of being a haemophilia carrier. Based on the five strategies identified, medical professionals should provide parents with information about haemophilia carriers and sharing information on genetic risk.