Exploring the psychosocial status and lived experiences of haemophilia carriers: a comprehensive mixed methods study

Abstract Introduction Haemophilia carriers (HCs) face psychosocial challenges, including emotional distress, health concerns, and pregnancy-related issues. Understanding their needs is crucial for optimal healthcare support. This study examined the emotional impact on haemophilia carriers (HC). Methods This mixed methods study employed a sequential explanatory design, beginning with a survey in the first phase, followed by a qualitative analysis in the second phase. HCs resident in Karnataka, fluent in Kannada or English, aged between 20 and 50 years, and having at least one child with haemophilia or being the daughter of a father diagnosed with haemophilia, and attending the haemophilia treatment centre at the Medical College and Hospital in Manipal, were eligible to participate. Results Quantitative analysis encompassed psychosocial variables such as stress, coping, and social support; there was no significant association between stress-coping (r=−0.13, p=0.303), coping-social support (r=0.206, p=0.099), and stress-social support (r=0.216, p=0.084). However, families who had been dealing with haemophilia for a longer duration exhibited better social support (r=0.265, p=0.033). Participants with higher stress and anxiety scores were selected for qualitative interviews. Fourteen in-depth interviews were conducted, revealing six key themes.: acceptance, social support, financial security, family history, birth control, and haemophilia burden. Carrier mothers deal with acceptance issues and inherit feelings of guilt, while the burden on affected children and maternal emotional distress were palpable. Conclusion This research offers valuable insights into the psychosocial wellbeing of HCs in India. It underscores the importance of holistic care, genetic education, and support systems to improve the overall quality of life for this population. By recognising the complex interplay of factors affecting HCs and their families, this study advocates for a comprehensive approach to healthcare that considers not only the medical aspects but also psychological and social dimensions among HCs.