Challenges and worries in life stories of women with bleeding disorders

Abstract

Women with bleeding disorders have rarely been studied. Recently, thanks to the advancement in treatment options and the recognition that women can also suffer from haemo-philia, new research lines have been developed. This study investigated the experiences of women affected by bleeding disorders (patients, healthy or symptomatic carriers), specifically focussing on disease diagnosis and management in daily life, relational issues, and reproductive options. Age, family history, educational qualification and religiosity were also considered. Thirty-two women were interviewed, and their narratives were analysed with lexical-metric and qualitative content analysis. The results showed some key themes, which refer to cognitive, affective and behavioural responses to the disease. They included both sex-neutral and female-specific contents, offering a new reading of the phenomenon. Although the aware-ness of female bleeding disorders has increased in recent years, sick women stressed late di-agnosis paths and symptom underestimations, while female carriers discussed psychosexual issues and motherhood choices, with related implications on physical and psychological well-being, and relational life. Alongside commonalities, some differences emerged depending on women's socio-cultural situations. Overall, they suggested the importance of developing early patient-centred psycho-educational paths in order to tailor interventions to specific women's needs, promote disease and self-acceptance, and enhance effective management.