RESUMEN
INTRODUCTION: Prophylactic replacement therapy has enabled improvements in the quality of life of patients with haemophilia. 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 haemophilia carriers (HCs), parents must inform their children regarding their possibility of being HCs. AIM: This study aimed to elucidate intentions and challenges among mothers with daughters who may be HCs, regarding providing them with carrier risk communication (RC). METHODS: Study participants were mothers with daughters who have the possibility of being HCs. Semi-structured interviews were conducted with 20 mothers and were fully transcribed. The analysis was undertaken using a grounded theory-informed approach, through a process of repeated inductive and deductive qualitative coding. RESULTS: The study included 14 mothers who had already provided RC to their daughters, five who had not yet provided RC but who intended to do so, and one with no intention of providing RC. Mothers who had already provided RC included those who were not troubled and those who experienced psychological difficulties regarding the RC. Participants who had not provided RC experienced difficulties with 'not knowing what to do' and feelings of 'anxiety due to uncertainty' and reported not knowing the best RC method or timing. CONCLUSION: The study revealed a need for support for persons experiencing difficulties with informing their daughters of their possibility of being HCs. Healthcare professionals can advise parents to reduce the burden of providing carrier RC to their daughters.