Conceptual Paper on Lived Experiences and Coping Strategies of Patients with Hemophilia and their Families

Hemophilia is a rare, chronic genetic bleeding disorder that significantly affects the physical, psychological, and social well-being of individuals and their families. Beyond the biological complications of recurrent bleeding and joint damage, patients and caregivers must also adapt to uncertainty, pain, and stigma. This concept paper explores hemophilia through a nursing perspective, focusing on the lived experiences of patients and families and the coping strategies they adopt. Drawing from existing literature and patient narratives, the paper highlights emotional, physical, and social challenges, while identifying adaptive coping mechanisms such as problem-focused strategies, family-centered care, and community-based support. A conceptual framework is proposed for nursing practice that emphasizes holistic care, psychosocial support, and empowerment of patients and caregivers. The paper argues for the integration of coping strategies into nursing education and practice to improve quality of life and health outcomes in hemophilia care.^1–5