MOTHERS WITH MULTIPLE β-THALASSEMIA MAJOR CHILDREN IN SABAH, MALAYSIA: A QUALITATIVE STUDY EXPLORING THE CONTRIBUTING FACTORS

Received 2022-03-15; Accepted 2022-10-11; Published 2022-12-31

Abstract

Despite having the highest prevalence of thalassemia in Malaysia, studies exploring factors that contribute to high thalassemia births in Sabah is still lacking. This study aimed to explore the reasons that may contribute to mothers in Sabah having multiple children with β-thalassemia major (β-TM). In-depth, semi-structured interview was conducted on 18 mothers with more than one β-TM child in two thalassemia treatment centres in Sabah. Thematic analysis was performed by two researchers and comparison of codes and sub-themes were made to verify the themes emerged. The thematic analysis revealed five core themes for reasons of mothers having multiple children with β-TM: 1) intention to have more children and acceptance towards child’s condition; 2) lack of understanding about thalassemia inheritance pattern; 3) barriers in prenatal screening; 4) barriers in abortion; and 5) ineffective family planning. Early identification of mothers with intention to have more children should be considered for active counselling. Providing continuous informational and financial support may increase uptake in prenatal screening, and involvement of local religious leaders to disseminate information regarding thalassemia prevention measures may improve effort to reduce thalassemia births in Sabah.