Intervention and Prevention of Hereditary Hemolytic Disorders in Two Ethnic Communities of Sundargarh District of Orissa, India: An Experience from KAP Studies

Abstract

Hereditary hemolytic disorders are important public health challenges in India. They cause a high degree of morbidity, mortality and fetal wastage in vulnerable communities. Tradition-bound-psychosocial influences are detrimental to the process of prevention. This study was designed to create awareness, motivate, and sensitize two major vulnerable tribal communities: Bhuyan and Kharia for hemoglobin and allied hemolytic disorders in addition to imparting prospective and retrospective genetic/marriage counseling. Bhuyan and Kharia tribal people in Orissa live in clusters practicing inter-village tribal endogamy and clan exogamy. For the present study, random sampling procedure for the selection of whole village was followed. Imparting of education, motivation and sensitization for carrier detection were carried out through IEC materials, holding interactive meetings and discussions at district, block and village levels. Both prospective and retrospective intervention and genetic/marriage counseling was done through the local PHC doctor. The pre- and post-intervention knowledge, attitude and practice (KAP) studies were conducted. Tribal people were not knowing the signs and symptoms of sickle cell disease (2.1%) and beta-thalassemia (1.0%), but after IEC, their knowledge was considerably improved (67.8%, 56.4%, respectively). Sickle cell patient needs treatment (37.6%) like folic acid, blood transfusion, etc. Beta-thalassemia is disease causes bloodlessness and is a transfusion dependent (73.2%). All patients of thalassemia major or sickle cell disease have carrier parents and carriers do not suffer from any clinical ailments. After intervention, it was known that G-6-PD is an enzyme, which helps in glucose metabolism of red cells (76.4%) and its hereditary deficiency causes hemolytic anemia, jaundice and black urination (73.8%) in malaria cases when anti-malarials are administered. Methodical and prudent intervention and preventive strategies found positive and encouraging impact on the affected people. Success of strategy showed apparent overwhelming response of the tribal people towards changing the traditional mindset and improving their health and quality of life.