Background: Haemophilia is a chronic genetic disorder characterized by impaired blood clotting, leading to recurrent bleeding episodes that significantly impact physical and psychological well-being. Patients often face various challenges, including social restrictions, stigma, and identity challenges, which give rise to different fears. These fears can affect their quality of life, mental health, and ability to perform daily activities. Limited research has explored the perceived fears of haemophilia patients, particularly in developing countries like Pakistan, where healthcare resources and awareness are constrained. Objective: This study aimed to explore the perceived fears of haemophilia patients in Pakistan, evaluate their causes and effects on various life domains, and assess the pathways they adopt to cope with internal bleeding episodes using the fear-avoidance model. Methods: A qualitative study design was employed, utilizing semi-structured interviews based on pre-developed interview guidelines. A total of 28 participants, including 20 males and 8 females aged 14 to 35 years, were recruited through snowball and convenience sampling techniques. The participants were from Rawalpindi, Lahore, Raiwind, Bahawalnagar, Gujranwala, and Hafizabad. Data collection continued until saturation was achieved, and thematic analysis was conducted following Byrne's guidelines (2021). Themes and subthemes were developed using QSR Nvivo 10 software. The fear-avoidance model was applied to assess the pathways adapted by patients during internal bleeding episodes. Results: The study identified several fears among haemophilia patients, including fear of bleeding (6/28), rejection (4/28), injury (4/28), pain (3/28), disability (2/28), and death (2/28). Fear of treatment, illness, emotional trauma, losing social roles, and discrimination or stigma were also reported. Patients commonly employed avoidance as a coping mechanism, leading to negative consequences such as psychological distress, isolation, and disability. The findings highlighted the significant physical and mental challenges faced by patients, including social restrictions, dependence, and identity struggles. Conclusion: Haemophilia patients in Pakistan face multifaceted challenges that give rise to various perceived fears, profoundly impacting their physical, psychological, and social well-being. The study emphasized the importance of addressing these fears through improved healthcare strategies, awareness programs, and supportive interventions to enhance the quality of life for haemophilia patients.
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