Impact of Haemophilia -A Disease on Social Life, Education and Employment   of Caregivers and Patients

Objective: To determine the impact of Haemophilia-A disease on social life, education and employment of caregivers and patients Study Design: Cross-sectional study Place and Duration of Study: Hemophilia Patients Welfare Society Centre Rawalpindi, Pakistan from Jan 2020 to Jan 2022. Methodology: A total of 80 couples who were parents to Haemophilia -A patients were recruited as subjects. After an informed consent, the couples were interviewed utilizing predesigned questionnaire comprising questions on basic demographic variables, education, monthly income, social life, employment and child education. The data were analyzed using Statistical Package for Social Sciences (SPSS) version 22.0. Results: A total of 55(68.75%) male parents had minimum qualification of matric or higher education in comparison to 49(61.25%) female parents who have achieved similar qualification. Families having Monthly income below 20000 rupees, between 20000-40000 rupees and above 40000 rupees were 24(30%), 48(60%) and 8(10%) respectively. A total of 74(95%) families believe that they are experiencing severe financial burden due to disease of their child. The family life of couples was found to be mildly affected in 4(5%) families, moderately affected in 11(13.75%) families and severely affected in 65(81.25%) families. None of parents were found to be satisfied with their child’s educational performance. Conclusion: The Haemophilia-A disease has a negative impact on the education, social life and employment of caregivers and patients. Moreover, Haemophilia-A disease adds to financial burdens of parents due to additional financial expenses on management of disease.