Psychological and cognitive factors involved in decision‐making process of haemophilia carriers in reproductive choices

Abstract

IntroductionHaemophilia carriers (HCs) face a multitude of psychological challenges, mainly linked to the possibility of having an affected child. Important reproductive decisions such as opting for pre‐implantation genetic testing, or choosing prenatal diagnosis and then whether to continue or interrupt pregnancy in case of affected male fetus, have to be taken into consideration. Notwithstanding, the role of psychological characteristics on such decision‐making process needs further investigation.AimThe aim of this study was to investigate whether HCs’ beliefs and emotions about haemophilia and cognitive factors such as decision‐making style, risk perception, coping strategies in response to stress, and need for cognitive closure might modulate HCs’ reproductive decisions.MethodsParticipants were interviewed about their beliefs and emotions on haemophilia and filled an on‐line standardized questionnaire on cognitive variables. Sixty HCs participated in this study.ResultsResults show that HCs with high distress for haemophilia given by negative childhood experiences for one or more family member illness and by high concern for their children's health, and with psychological traits characterized by logical (versus emotional) reasoning, active coping style and high need for certainty, tend to choose diagnostic prenatal tests over routine pregnancy analysis.ConclusionThis study highlighted the influence of negative early‐life experience with haemophilia and of several cognitive factors in HCs choice of prenatal test.

Gender equity in hemophilia: need for healthcare, familial, and societal advocacy

“…Women and girls with hemophilia, carriers and their partners must face important reproductive decisions, due to the possibility of having an affected child (41). Around 30% of women are unaware of their carrier status at the time of delivery, even if a positive family history is present (42, 43).…”

“…Studies investigating the experience of carriers throughout the reproductive decision-making and PND showed that the decisionmaking process depends on factors such as the severity of hemophilia of family members, their health-related quality of life, already having a child with hemophilia, living near a specialized medical center, having access to genetic and reproductive counseling and religious beliefs. Moreover, the cognitive and emotional aspects of this process are important as well (41,47).…”