Social challenges and support needs of patients with hemophilia in Pakistan: a qualitative exploratory study

Hemophilia significantly impacts both physical health and psychosocial well-being. In Pakistan, limited resources, social stigma, and inadequate support systems often worsen these burdens. This study explored the lived experiences and support needs of adult patients in thisresource-constrained setting.

We conducted a qualitative study with 30 men (ages 20-45) at the Sundas Foundation in Lahore. Data from semi-structured interviews in Urdu were transcribed, translated, and analyzed using thematic analysis.

Four key themes emerged: (1) widespread social isolation and stigma (reported by 28/30 participants); (2) the family unit as the primary source of emotional and daily support; (3) significant educational and career barriers caused by physical limitations (25/30); and (4) an urgent need for decentralized care to ease travel and financial pressures (27/30). Younger participants increasingly relied on digital peer-support for practical treatment advice and emotional connection.

Adults with hemophilia in Pakistan face deep-seated social and structural hurdles. Improving quality of life requires shifting toward community-based services, raising public awareness, and embedding psychosocial support into routine clinical care. While limited by its single-center design, this study highlights critical areas for policy intervention.