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

BACKGROUND: Hemophilia significantly impacts both physicalhealth and psychosocial well-being. In Pakistan, limited resources, socialstigma, and inadequate support systems often worsen these burdens. This studyexplored the lived experiences and support needs of adult patients in thisresource-constrained setting. RESEARCHDESIGN AND METHODS: We conducted a qualitative study with 30 men(ages 20-45) at the Sundas Foundation in Lahore. Data from semi-structuredinterviews in Urdu were transcribed, translated, and analyzed using thematicanalysis. RESULTS: Four key themes emerged: (1) widespreadsocial isolation and stigma (reported by 28/30 participants); (2) the familyunit as the primary source of emotional and daily support; (3) significanteducational 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 forpractical treatment advice and emotional connection. CONCLUSIONS: Adults with hemophilia in Pakistan facedeep-seated social and structural hurdles. Improving quality of life requiresshifting toward community-based services, raising public awareness, andembedding psychosocial support into routine clinical care. While limited by itssingle-center design, this study highlights critical areas for policyintervention.