This study explored patients' experiences and perceptions of living with thalassemia (an inherited hematologic disorder), perceptions of social stigma, and impact on disclosure decision-making. Semistructured, in-person interviews were conducted in Singapore with 30 individuals: 16 thalassemia major patients and 14 parents of children with thalassemia. Findings were indicative of felt or enacted stigma that may have influenced disclosure decisions. Although affected individuals commonly disclosed their thalassemia diagnosis to family members, they either downplayed the condition with or avoided disclosure to unrelated individuals. Disclosure outside the family occurred only in response to triggers, such as questions about absences due to medical care. Health professionals should provide anticipatory guidance about disclosure strategies when managing individuals with thalassemia.
Managing the need to tell
Triggers and strategic disclosure of thalassemia major in Singapore
Kumar, N., Turbitt, E., Biesecker, B. B., Miller, I. M., Cham, B., Smith, K. C., & Rimal, R. N. (2019). Managing the need to tell: Triggers and strategic disclosure of thalassemia major in Singapore. American Journal of Medical Genetics Part A, 179(5), 762-769. https://doi.org/10.1002/ajmg.a.61107