In most cases, parents have a responsibility to inform their daughters of the possibility of being carriers of haemophilia; however, explaining inherited disorders can be a heavy psychological burden for both parents and children because of the possibility of passing a pathogenic gene on to future generations. Carriers are also known to experience a sense of burden, distrust, disappointment, and related emotions.
Parents have been found to experience difficulty in providing information about genetic inheritance to their children through open communication. In particular, they may be afraid of their daughters’ reactions to the news that they are carriers. In addition, a recent study revealed the need for support for mothers who have difficulty informing their daughters that they may be carriers of haemophilia. The mothers interviewed showed difficulty and anxiety due to the uncertainty of not knowing how to deal with their daughters.
To ease this burden, the role of healthcare professionals is critical as they can provide advice to parents of daughters who may be carriers of haemophilia to best address their concerns. The effects of genetic counseling have been reported in several research studies: if this type of counseling is provided, the explanations of disease inheritance provided by the genetic counselor help improve the family’s lack of knowledge.
Reference:
- Fujii T, Fujii T, Miyakoshi Y. Mothers’ intentions and behaviours regarding providing risk communication to their daughters about their possibility of being haemophilia carriers: A qualitative study. Haemophilia. 2019;00:1–7. https://doi.org/10.1111/hae.13864
