Families’ hopes for strengthening education to bridge thalassemia knowledge gap: a phenomenological study

The prevention of thalassemia, particularly through early detection, is a significant concern that is currently inadequately addressed in Indonesia, where the condition is not widely comprehended. To develop effective family- and community-based health promotions and interventions, it is crucial to consider the perceptions and hopes that patients’ family members have about thalassemia education. This qualitative study employed a phenomenological approach, involving 24 family members of thalassemia patients from the Java and Sumatra Islands, to investigate their perspectives and hopes for strengthening thalassemia prevention strategies. Four themes emerged from analyzing the interview transcript data using the Collaizi method: i) the importance of early premarital education; ii) the hope that thalassemia will be included in the school curriculum; iii) the necessity to broaden thalassemia education across various facilities; and iv) the engagement of other sectors in thalassemia screening and prevention. This study highlights the necessity for the government to provide adequate support for thalassemia prevention. To enhance the effectiveness of thalassemia prevention, the government and other relevant parties should promptly develop prevention programs at the school level and implement premarital screening regulations in marriage institutions.