NAVIGATING SOCIAL ISOLATION: A FOCUS ON THE PSYCHOSOCIAL CHALLENGES OF HAEMOPHILIA PATIENTS IN PAKISTAN

Abstract

Background: Haemophilia is a rare inherited bleeding disorder characterized by a deficiency of clotting factors, leading to prolonged bleeding episodes. The condition profoundly impacts patients’ physical, psychological, and social well-being, especially in resource-limited settings like Pakistan. Exploring the perceived fears and coping mechanisms of haemophilia patients is essential for addressing their psychosocial challenges and improving their quality of life.

Objective: The study aimed to explore and evaluate the perceived fears among haemophilia patients in Pakistan, focusing on the causes, effects, and pathways adopted to cope during internal bleeding episodes.

Methods: A qualitative approach was adopted using semi-structured interviews guided by thematic analysis. The study included 28 participants (20 males, 8 females) aged 14–35 years, recruited through snowball and convenience sampling from Rawalpindi, Lahore, Raiwind, Bahawalnagar, Gujranwala, and Hafizabad. Data were collected until thematic saturation was achieved. The interviews were analyzed using QSR NVivo 10, and themes were derived based on the Fear Avoidance Model and Braun and Clarke’s thematic analysis framework. The primary themes encompassed perceived fears, including fear of bleeding, rejection, injury, pain, disability, illness, emotional trauma, losing social roles, discrimination, stigma, and death.

Results: Thematic analysis revealed that 75% of participants avoided physical and social activities due to fear of bleeding. Fear of pain was reported by 71%, while 68% expressed fear of disability. Over 60% highlighted concerns about stigma and rejection, leading to social isolation. The findings also indicated that 36% experienced emotional trauma and anxiety, while 18% reported depression and suicidal ideation due to haemophilia-related challenges. Most participants (80%) adapted avoidance strategies, which negatively impacted their social, academic, and psychological well-being.

Conclusion: Haemophilia patients in Pakistan face substantial psychosocial and physical challenges that significantly disrupt their lives. Addressing these fears through tailored healthcare strategies, enhanced social support, and awareness programs is essential for improving their overall well-being and quality of life.