Mothers’ Intentions and Behaviors Regarding Providing Risk Communication to their Daughters About the Possibility of Being Hemophilia Carriers: A Qualitative Study

There is a need to support parents experiencing difficulties informing their daughters of the possibility of them being hemophilia carriers (HCs), according to a new study published in Hemophilia.

“Prophylactic replacement therapy has enabled improvements in the quality of life of patients with hemophilia. However, these patients and their families continue to report psychosocial problems regarding pregnancy and childbirth. In a situation where there is little medical support for hemophilia carriers (HCs), parents must inform their children regarding their possibility of being HCs,” the research authors wrote.

This study comprised of 20 mothers with daughters who are possible HCs, including 14 mothers who had already provided risk communication (RC), five who had yet provided RC, and one mother with no intention of providing RC. Semi‐structured interviews were conducted with the subjects and these interviews were fully transcribed. The researchers used a grounded theory‐informed approach, through a process of repeated inductive and deductive qualitative coding, to analyze the data.

According to the results, mothers who had already provided RC included those who were not troubled and those who experienced psychological difficulties regarding the RC. The researchers also observed that the mothers who had not provided RC experienced difficulties with uncertainty, anxiety due to uncertainty, and reported being unsure of how to handle the best RC method.

“Healthcare professionals can advise parents to reduce the burden of providing carrier RC to their daughters.”